Empowered by hope - a PHA diary

Bruno Kopp: leader, hero, friend...

2012-02-07T17:16:00.000-08:00

We still lose too many to this disease...and today we lost another.

Today, it was Bruno Kopp, the leader of the German PH association, PHeV. He founded the organization in 1996 for the same reason that PHA's founders began ours...to help end isolation. Five years later, he organized the Rene Baumgart Foundation to raise money for PH research.

Rene Baumgart was Bruno's nephew, a nephew who had lost his mother to PH at the age of 10. Rene, himself, passed at the age of 19. I remember Bruno telling me that he became so angry about his nephew's loss, he created the Foundation to forge meaning from what had happened. You see Rene and his mother weren't Bruno's first loss to this disease. Fifteen of his family members, including Bruno, had been diagnosed with PH.

In 2006 and 2011, I was honored to stand next to Bruno in Frankfurt and speak at both the 10th and 15th annual Conferences of PHeV and, this year, had hoped that Bruno would be able to make the trip to Orlando in June to PHA's 10th bi-annual Conference. I am sad that will not be.

During PHeV's 10th Conference, I had been going through some difficult issues. One evening, Conference attendees were treated to a wonderful caberet performance. Bruno had asked me to sit next to him. At one point, he stood and dedicated the next song to me and to PHA. The song was Carole King's, You've Got a Friend.

Bruno, you were a good man who took the hard things that came into your life and turned them into good for many people. You were - and are - a hero.

You will not be forgotten...you've got a friend.

A 20 year anniversary...

2012-01-30T16:29:00.000-08:00

Earlier today, Amanda Butts was digging into our archives and found information about PHA’s original non-profit incorporation. What was striking was the date of that incorporation – February 11, 1992 – almost exactly 20 years ago.

A lot has happened in two decades…

PHA was known as United Patient Association for Pulmonary Hypertension (UPAPH) then. At the annual meeting in January of 1992, with ten people present and $858.31 in the bank, Ed Simpson proposed that PHA organize an International Pulmonary Hypertension Conference. And, organize they did, with the first PH Conference being held in 1994.

Taking place every two years since, PHA’s Tenth International Conference will be coming up this June in Orlando, Florida. Thanks to the willingness of these early patient and caregiver leaders to risk and work to create something extraordinary, these have become the largest PH meetings in the world drawing attendance from up to 20 countries.

In July of 1992, Stuart Rich, MD, Elizabeth Kaufmann, RN and Paul Levy, ScD published a key paper on calcium channel blockers in the New England Journal of Medicine. Today, the research field for PH has swelled as a unusually cooperative and productive body with the results that there are now nine treatments for PH (all since 1996, eight since 2001).

The minutes of the 1992 UPAPH meeting report on the intent to create a Scientific Advisory Board and the compiling of regional lists of doctors with interest in PH. Well, they certainly got that done. With what has become a globally recognized Scientific Leadership Council and two medical associations within PHA (one for physicians, the other for allied health professionals), not only are medical professionals listed but they are working actively with each other on many important projects…from face to face medical education, online education, research and journals to webinars for patients, knowledge videos and the creation and approval of new informational pieces for our entire community (too many possible links for that one!).

At the same time, the early leaders decided to create information packets for patients and new members. That was the seed that led to the dozens of brochures and booklets and thousands of pages of online information now being offered, including information for new patients.

The two support groups they started 1992 with have now grown to well over 230…and the 141 UPAPH members then are over 13,500 PHA members now.

Oh, and the database they authorized at that meeting has now grown to 70,000 people who are – members or not – interested in this disease and are potential connections for change.

So this seems like a blog that’s more about the details than the personalities…but I don’t think so.

To me, the numbers tell the story of possibilities – possibilities transformed to reality by people who refuse to accept impossibility.

All of us who are concerned about changing the history of this disease are indebted to the pioneers who created focus and direction 20 years ago. We build on what they began.

Affirming the human spirit...

2012-01-23T09:09:00.000-08:00

“Thank you for reminding me why I became a doctor.”

The first time I heard those words were in 2002 at PHA’s Fifth International Conference in Irvine, California. It was a striking statement from a globally recognized PH physician.

I’ve heard similar words since from other medical professionals and I’ve heard so many stirring words from patients and their families about what Conference means to them…

“These past 4 days were honestly life changing. I found hope.”

“I will always remember this conference. Words cannot explain the blessing it was to me. I loved the research room. It gave me a chance to make a difference in maybe a cure for the next generation.”

“Coming to the conference brings out the best in us; it usually gives people a reason to shine.”

“This conference is such an opportunity for me to learn and feel the love and support of my fellow fighters.”

What is it about this event that makes it so special in people’s lives?

I guess every person whose life has been touched by Conference has their own answer. I can only give you mine.

Conference to me is an affirmation of the human spirit.

I have listened to Carl Hicks speak eloquently and movingly about “Why I Fight”.

I have seen the barriers between medical professionals and patients dissolve as physicians and their patients participate in a centerpiece of each Conference, the Journeys discussions…an activity that is so much more about relationships than medicine.

I have seen doctors, nurses and other allied health professionals at the highest levels of expertise in this field give enthusiastically and freely of themselves to offer clear and valuable education and fellowship to patients and families…and to each other.

And, most of all, I have seen people connect in deep and meaningful ways, in ways that make them – and all of us – stronger in the fight against PH.

We are an extraordinary community; there is no doubt about that. Nowhere is that sense of community more visible than at Conference – the largest PH meeting in the world. This year especially, PHA’s Tenth, I hope you will be able to join us from June 22 to 24 in Orlando, Florida.

Making a big noise for big change...

2012-01-05T10:42:00.000-08:00

Remember the famous question, Would there be a noise if a tree fell in the forest and no one was around to hear it?

I've often thought that our challenge with PH is like that.

Without an awareness among our neighbors and fellow citizens of what PH patients and their families are going through, how can we be heard?
How can we build an effective movement for change?

Over the years, we've made public awareness a taget and, despite our small numbers, have had good success.

During my first year at PHA, we asked our members repeatedly to send us all the articles they could find on PH. The total we received in that year - 1999 - was four. Today, if you check Google News, you'll find one to four articles on any given day...and many of those articles have been driven by the efforts of our media volunteers and other community members. Our stories drive our power for change. They take us from the loneliness of the forest to consciousness in the public square.

An example of that consciousness came in mid-December. As I mentioned in my last blog, we were awaiting publication and on the 16th of the month, USA Today included an eight page insert on pulmonary hypertension in six major metropolitan areas - Boston, Chicago, Dallas, Nashville and St. Louis. The 485,000 inserts reached an estimated 1,200,000 readers. It's online now and worth your read.

In 2012 PHA will be doing more to build that consciousness as a tool for change. Through a recent reorganization, we have recently targeted strengthening our internal public relations and marketing capabilities. This includes bringing on a new Vice President for Community Engagement, Mollie Katz, with strong pr and marketing background. In coming months, you will also have an opportunity to be part of the launch of an Early Diagnosis Campaign with the goal of speeding the time from onset of symptoms to diagnosis and treatment. A broader by-product of that effort will be a larger spotlight on this disease.

We may never be able to answer the question about the falling tree but we can certainly make a big noise...and a big difference.

May 2012 be a year of great change and a better life for all those living with PH.

Opening a door to PH pediatric research

2011-12-08T15:36:00.001-08:00

On November 7, Bob Gray in PHA's Development Department and I traveled to New York for a small but important celebration...an event that we hope will someday soon mark a turning point in pediatric pulmonary hypertension research.

On the train up from Washington, DC, I found myself thinking back to 1999 when Jack Stibbs - the father of young Emily (now a college student) - had come to PHA wanting to raise funds for pediatric PH research. Dr. Bruce Brundage had to tell him that there was no specific pediatric PH research underway at the time and precious little in PH period. He told Jack the goal needed to be pulmonary hypertension more generally. That answer was always a target for change.

Last year, Dr. Robyn Barst, one of the pioneer pulmonary hypertension researchers and clinicians - and the pediatric cardiologist who founded the PH Center at Columbia - made a generous contribution to begin a pediatric research fund...one which PHA named in her honor.

Our plan is to begin to advertise for grant applications when the Robyn Barst Pediatric Research Fund reaches $1,000,000.

The purpose of our luncheon in Manhattan was to receive an extraordinarily generous $500,000 contribution to add to the Fund. It was given in Dr. Barst's honor from the Cardiovascular Medical Research and Education Fund (CMREF).

Pictured from left to right in the photo above are Dr. Stuart Rich who among other contributions led the early research on calcium channel blockers for PH, PHA's Bob Gray, Dr. John Newman whose many contributions to the field include a leading role in research resulting in discovery of the PH gene, CMREF board member Michael Fishbein (Mr. Fishbein is a Philadelphia attorney who coordinated much of the fen phen litigation), Robyn's husband Dr. Sam Barst and Dr. Robyn Barst, PHA board member Rev. Steve White who is also a significant contributor to the Barst Fund, Dr. Erika Berman Rosenzweig who succeeded Dr. Barst as Director of the PH Center at Columbia Presbyterian Hospital in New York City and me.

CMREF's gift has moved us to just about $800,000, much closer to the day when we can begin making grants from this important new Fund.

On December 16, PHA will be running the ad below in a pulmonary hypertension insert in over 485,000 copies of USA Today in Boston, Chicago, Dallas, Nashville, St. Louis and Baltimore/Washington, DC. Expected readership is over 1.2 million.

Readers are encouraged to visit a new web page at
www.PHAssociation.org/BarstFund
We hope you will too!

A quarter century ago, PH research was just beginning. Today the interest and advances are significant and growing. It's time for pediatric PH research to have the opportunity to catch up. PHA is proud to help make that possible.

I hope you'll take a look at the 8 page USA Today insert on PH. It includes the Barst Fund ad and a lot more.

The Lantos Grants: now it's YOUR turn...

2011-11-21T11:48:00.001-08:00

Our advances at PHA have always come as we have learned from each other.

PHA's annual Tom Lantos Innovation in Community Service Awards are a great example of that truth.

Up to ten creative ideas will be funded in 2012 with funding of up to $5,000 for each, thanks to an annual grant from Gilead.

If you've got a good idea that can help the PH community, read the guidelines and YOU can apply NOW! The deadline is January 6.

In 2011, Colleen Brunetti's idea was to create a YouTube video discussing the value of PH e-mail and discussion groups. With other patients, Melanie Kozak, Raye Bohn, Misty Lewis and Carol Morrison as the on-screen talent and PH dad Steve Van Wormer as the narrator, Colleen's vision was funded through a Lantos grant and became reality. It's now available online both as a value for the PH community and a best practice for others to build on. You (and the rest of the world) can watch it now!
Donna Lain and her daughter, Andrea, had an idea to to provide support for children diagnosed with pulmonary hypertension...Kari Bags named in honor of Donna's daughter, Kari Beth (9/9/1982 – 5/27/2003). The bags provide educational material about pulmonary hypertension and are filled with age appropriate toys, games, and stress reliever items. Kari Bags allow kids to have stuff to play with when they are required to be in the hospital for procedures and tests or admitted for infections or line problems. The bags are produced for three age groups and distributed through PH Centers and pediatric PH support groups. So far, the new program has distributed over 150 Kari bags and were featured at this year's PHPN Symposium.
In 2010, the first year of the Lantos Grant program, Donna Caterini received funding to fulfill her idea of building PH awareness through a clever "Huff & Puff" poster, featuring the Big Bad Wolf. The 11x17 posters have been a big hit...distributed through support groups and available for free to any in our community who want to place them in local libraries or other public places.

And the Lantos grant program isn't restricted to the U.S. It's available to the PH community throughout the world. Read the story of the Spanish PH group, ANHP. That's a picture of their meeting to educate psychologists about the needs of PH patients at the top of this page.

Now it's your turn! If you have an idea you'd like to bring to reality for the good of the community, the Lantos grants are for you. The application is not complex and the benfits for all who live with PH are great.

We look forward to receiving your proposal.

An awareness month journey...

2011-11-10T10:50:00.000-08:00

As I write this, we are only 10 days into Awareness Month...and it is already shaping up to be an extraordinary journey.

I began the month a bit early (October 28) with a 3 day trip to Frankfurt, Germany where I was honored to address the German PH Association - PHeV - on the occasion of their fifteenth anniversary. Their founder, Bruno Kopp, is a PH patient in a family with 15 PH patients. He is a man who said, "enough", and in 1996 decided to do something about this disease. Over 300 patients and family members attended the conference and, besides Bruno, it was great to see so many old friends, including Gunter Timm (who acted as my translator) and his son, Drs. Olschewski, Grünig and Ghofrani and PHA Europe president Gerry Fischer. The event was a strong reminder of how vibrant the global PH community has become.

The day after getting back, Dr. Rich Channick and I journeyed to New Jersey where we met with Novartis medical leadership to help them understand PHA programs and activities as they anticipate entering this market.

When I got back to the office I saw an amazing growth in the ways our community is using social networking to build awareness of PH. Weekly Facebook prompts began going out from our office with the first being, Pulmonary hypertension feels like... Emma Bonanomi summarized this week's 83 responses as...

ranging from the serious (“running up and down stairs for at least 10 minutes on an empty stomach with no sleep”), to the lighthearted (“the best dang excuse to play video games I've ever had :D”) to the inspirational (“my number one reason to fight harder”).

PHA's Facebook friending (and reach) has been growing at an amazing pace this month - at 4,981 this afternoon - on pace to be over 5,000 in the next day or two.

On another communication front, our web staff - Diane Greenhalgh and Kathy Frix - added a great new tool to PHA's website. In the upper right hand corner of every page on http://www.phassociation.org/ is a select language box, allowing translation into any of 52 languages.

City, County and State PH Awareness Month proclamations have been flowing in rapidly (Elisabeth Williams reports 33 and growing) and South Carolina PHA member Doug Taylor even got his Member of Congress to discuss PH Awareness Month and PHA in the Congressional Record.

The American Thoracic Society has partnered with PHA for a PH Week (it began November 6) within that society of pulmonologists and launched a website to educate ATS membership. As part of this effort, PHA is hosting a webinar on November 10 with 5 leading physicians presenting on Improving Patient Outcomes and Early Diagnosis. Several days after the live event (over 170 registered!), it can be viewed on both PHA Classroom and PHA Online University.

Last Sunday, Jess McKearin and I were in Palo Alto, California for the Stanford Race Against PH. It was their 11th Annual begun by the Ewing family and now grown to an event that includes over 1,500 participants. Board members Harry Rozakis and Rita Orth were there to join with Drs. Zamanian, Krasnow and Feinstein and Kristi Kerivan and their great team from the Wall Center at Stanford. This year PHA launched our new Six Minute Marathon as part of the Race to provide more understanding of what PH patients go through with this disease. It was a great success and we'll be rolling out the Six Minute Marathon at other events in 2012.

While Jess and I were in Palo Alto, Adrienne Dern, our Senior VP, was speaking at the patient program at the Cleveland Clinic PH Summit and our Medical Services staff. Rebecca Kurikeshu and Caitlin Flewellen were staffing a well-trafficked exhibit at the American College of Rheumatology meeting in Chicago. Debbie Castro was on the road, too, for events in Phoenix and Fort Wayne.

The day after Palo Alto, Bob Gray and I Amtraked to New York where we had a wonderful luncheon to celebrate a major gift to the Robyn Barst Pediatric Research Fund. We'll be telling more of that story very soon. Tomorrow it's on to Memphis for an American Thoracic Society Patient Advisory Roundtable board meeting.

As I'm typing this, Megan Mallory brought in a hot off the presses copy of our 2011 annual report and that will be going out in the mail to members in the next few days. I think it gives a great outline of all that our community is doing to change the history of this disease.

We've still got a long way to go on our the Awareness Month 2011 journey. Check PHA's News Feed to see what's new with Awareness Month...and PHA's Awareness Month pages to see how you can help!

Let me breathe...

2011-11-04T15:26:00.000-07:00

There is so much happening during PH Awareness Month.

...And it's happening all around the world. Today, I received a Facebook friend request from a young man in South Korea. When I took a look at his page, I was amazed to see a promotion of PHA's upcoming (Nov. 10) webinar - Improving Patient Outcomes and Early Diagnosis: An Examination of the REVEAL Registry - right at the top! The presenters will include:

C. Gregory Elliot, MD, Intermountain Health Center (Facilitator)
Vallerie McLaughlin, MD, University of Michigan
Lynn Brown, MD, PhD, Intermountain Health Center
Richard Channick, MD, Massachusetts General Hospital
David Badesch, MD, University of Colorado at Denver

Also today, Megan Mallory, who leads our Publications Department, got a lovely note from the Co-Leader of the Toronto Chapter of PHA Canada. Ruth Dolan, who had attended a webinar on Expression of Well Being led by Megan and Janet Stone, wrote:

I thoroughly enjoyed this webinar and do look forward to attending more in the future. I mentioned during that session that I would be participating in an experience at our local library called "Get a Life- Human book Festival" and I said I would get back to you about the experience so you might choose to share it with other PH Friends.

It was an amazing experience and for me an opportunity to share my PH Journey with my youngest daughter Emily, with those who came to the library and "took me off the shelf" to "read" me.

My "Book" was called "Let Me Breathe". just like the PH Song written by my brother, J. Paul Adams for his niece and dedicated to her and all PH patients [see below]

There were about 7 human books at our local library branch and there were four libraries through out Simcoe county participating, one for the four Saturday's in October. For me it was yet another opportunity to make people aware of PH in a very personal way.

About 30 min. was allowed for each reader but we always seemed to spend at least 40 -45 min. together; as my reading sessions had a break between each one I was able to spend the extra time with the readers. My first reader was an author and a very caring listener. She has since asked me if I would like to write my story to be included in a book of other women's stories....very tempting.

I took our PH Canada and Toronto PH brochures along to give to my "readers' so they had something to take away and do further research about PH. The local media was also at the even and interviewed some of the "Books".

Although it was a "small" audience with which to share our PH Journey it was one that I would gladly do again because of the personal nature of the sharing and I think and the impact it had on the "reader". I feel that just as when I read a great book I love to share it with friends, I also feel that my readers will hopefully share the experience of reading "Let Me Breathe" with their friends and thus making even more people aware of Pulmonary Hypertension.

On another note:

Our Toronto PH Fundraiser and awareness campaign is taking place this Saturday. We have the Let Me Breathe Vegas Night and are also using that occasion to gather real and virtual hand prints that will go on a large banner or several I hope , to our capital in Ottawa on the 29th of November. Feel free to add your hand print to our efforts by using the link below from our Canadian Website.
http://www.phacanada.ca/index.php?cID=975

All the best to you and to all our American PH Friends. I am looking forward to seeing you again in Orlando in 2012

Here is Let Me Breathe, written by J Paul Adams, Ruth's brother...

It can also be found on the PHA Toronto website.

First Media in Awareness Month

2011-11-02T12:31:00.000-07:00

I just watched Patty Kaiser's interview on St. Louis TV station KSDK. Meet Me St Louis host Julie Tristan filmed and edited Patty, using live and archived footage that ranged from the Blue Lips campaign to 2011 PHA Dinner and Wine Tasting Fundraiser coming up on Saturday November 12th. It was a great start to Awareness Month. Watch the Video

After her interview, Patty wrote:
Patty is not alone in getting awareness month going...

Even through I am terrified of sitting in front of a camera and being interviewed, I am so passionate about PH awareness, and getting the message, out that I am willing to "put myself out there" so others may not have to go as long as I did before finally being diagnosed.

Alex Filipse hit a proclamation trifecta with proclamations from Takoma Park (the city where she lives), Montgomery County (the county where she lives) and Maryland itself (the state where she lives...and proclamations are starting to roll in from around the country.

Gerri Brown suggested...

Here's an idea that we may want to try on PH Awareness day or Month - change your last name to one of your meds.

Now, she's Gerry Viagra-Brown on Facebook and we're seeing the idea move like wildfire through the community, raising questions and curiosity that are giving a great opportunity to talk about PH.
This year's Awareness Month theme - The Power of One - is leading to benefits for many!

Welcome to Awareness Month!

2011-10-31T14:42:00.000-07:00

The Power of One

Awareness Month is here! To kick itoff, here’s a post from Katie Kroner, PHA’s Director of Advocacy and Awareness.As you’ll see, there are Awareness Month activities going on around the world.I hope you’ll add your voice to the conversation!

This year’sAwareness Month theme, The Power of One, reminds me of lots of remarkablethings about the PH community. We’ve worked together to end isolation, growingfrom a community of a few to a community of thousands. Our advocacy has broughtPH to the attention of the medical and pharmaceutical communities, taking usfrom zero treatments to nine—more than only two of the 7,000 identified orphandiseases. Most of all, The Power of Onereminds me of the everyday heroes — each of you – without which we could not bewhere we are.

The first National PH Week was heldNovember 2-8, 1997. PHA’s historical records note some important milestonesduring those early Awareness Weeks including growth of the support groupnetwork to 35 groups in 1998. (We now have 235.)Since 1997, PH Week has become PHAwareness Month and reaches across the country and around the word but itsindividual people, growing ideas into successes, that still make the PHcommunity what it is. Here are just a few of the big ideas that will makeAwareness Month 2011 a huge success:

· Each year, the PH community requests Awareness MonthProclamations from their local elected officials, but when Doug Taylor issued achallenge for some state (any state!) to beat South Carolina’s record of 11proclamations in one year, he started something big. On Facebookalone, 98 people have responded to Doug’s challenge. Perry Mamigonian hasinspired Support Group Leaders across California to take on the challenge, butproclamations are also coming in from Maryland, New Jersey, Tennessee,Nebraska…you get the picture.

· November boasts nearly twenty special eventfundraisers aimed at supporting PH research and PHA programs.Organizers took their unique ideas and passions and turned them into communityendeavors. Nicole Cooper is turning her first-time event vision into a realitywith the Vision of Hope Gala inMaryland on November 12. Other first time events include a Zumbathon and chilicook-off. Many organizers have multiplied their impact by connecting with themedia to promote their event and raise awareness of PH in their communities.

· On November 1, more than 400 people used Facebookand other online tools to spread the word about pulmonary hypertensionworldwide. One caregiver from Germany wrote to say that he has posted a PH webbanner on his software blog, which receives about 2,000 visitors a day. That’sthe power of one to raise awareness about pulmonary hypertension.

Individually, we are powerful. Together, we are unstoppable. How will youput your awareness raising power to work this November? Learn more and join ourfight against PH!

PHPN...a building block to a better future

2011-10-08T11:17:00.000-07:00

The more that's going on...the less time there is to write about it.

Since the Friday before last, PHA has had meetings for our Scientific Leadership Council, medical journal Editorial Committee, Research Committee, PH Professional Network (PHPN) Executive Committee, and PHA's Board of Trustees and its various committees. I'll try to get time to blog about some of these meetings but I'll focus today on the largest of the meetings, the 2011 PHPN Symposium.

The Symposium is a three day annual meeting that takes place every two years. Planned by PHA's allied health group, PH Professional Network, the event is an opportunity for education and networking in this rapidly growing field. In recent years, the event has also supported the growing strength of this community of PH nurses, pharmacists, respiratory therapists, NPs, PAs, social workers and others who support the treatment of PH patients.

The Symposium is always held in the Washington, DC area where we begin with Advocacy Day. Almost 100 of this year's record 465 Symposium registrants participated. Not only did they have an important and worthwhile experience talking to their elected representatives on Capitol Hill about the Pulmonary Hypertension Research and Education Act but they bring that experience back to their medical centers and patients.

This year a special target for Symposium was increasing the number of abstracts and posters presented. This is a shared learning opportunity and one for which PHPN leadership wanted to build the skills needed. In order to do this, they knew they had to teach. They created a new section of the PHA website on submitting an abstract for a poster presentation. One of their founding members, Lisa Wheeler, research coordinator at the Vanderbilt University PH Center recorded a webinar, guidelines and samples were posted and mentoring was offered. A Symposium that had no abstracts two events ago and very few at the last Symposium grew to 40 at this year's event. The value of information exchange was huge not only for this meeting but is now a skill that exists within the community and will grow and be used at future symposia and other medical meetings for the benefit of medical knowledge in the field.

The educational program is always rich, This year's Symposium - chaired by Melisa Wilson, APRN, BC - with 60 expert presenters delivering an information-filled program was no exception. A real highlight was a plenary session entitled A New Dimension of Hope: Virtual Catheterization Lab presented by Russel Hirsch, MD, Cincinnati Children's Hospital and James Tarver, MD, Orlando Heart Center. Rather than slides, Dr. Hirsh used a specially created animation of a heart catheterization. It was a wonderful teaching opportunity. Motivation is also a powerful Symposium element and this year's keynoter, Jessica Lazar MPA, PA-C , was a huge hit, telling her story of the Kilimanjaro Climb she and Drs. Benza and Frantz did for PH awareness.

PHA had all the sessions filmed and they will soon appear on PHA Online University, enriching teaching opportunities for medical professionals around the world.

Since the first Symposium in 2003, I have watched these meetings grow from 60 attendees to, this year, well over 400. They have become not only a cornerstone of medical education for allied health professionals in the field but they have also sparked stronger collaboration that is now taking place every day online and face-to-face. Seeing the level of commitment and compassion, I have no doubt that PHPN has become an essential building block, leading the way to a better future for patients and their families.

Making a difference...

2011-10-03T07:18:00.000-07:00

In recent years, our friend Hall Skara has been building PHA Norway into an effective voice for pulmonary hypertension patients in his country. It's a great effort in a nation where there are not many diagnosed patients.

On September 25, PHA Norway held their national conference. the event generated good press coverage and and the 11:30 minute TV interview below. Many thanks Hall for subtitling the interview in English!

I really enjoy blogging about PHA Norway. They are a great example about how even a small community of patients, family members and medical professionals can make a difference.

Learn more about how PHA Norway got started and about the international PH community.

Risk to reality...

2011-09-16T16:57:00.000-07:00

Today, I did something that astonished me.

I signed a licensing agreement that will help PHA bring medical education to India in an important new way.

Why this was astonishing goes back to 2000...

On the second day of PHA's Fourth International Conference - June 24, 2000 - in the atrium of the Wyndham Hotel, Dr. Bruce Brundage, Craig Mears (then of Gentiva) and I met to talk about the possibility of publishing a medical journal.

Bruce had the reasonable concern that any publication not be "a throwaway" for the doctors who would receive it. I saw the impact it might have but wasn't sure whether there was enough content to sustain a medical journal over the long term. Craig was willing to talk to his company about the initial funding.

It was a different time then. There were only about 100 treating physicians in the U.S. - and they were seeing about 3,000 patients. Only one complex and still relatively new treatment had been approved by the FDA at that point, not the nine we have today.

Several months after the Conference, Dr. Brundage (then Chair of PHA's Scientific Leadership Council) convened a telephone conference to talk about the possibility.

The group understood the potential value and decided to move forward. Dr. Tapson at Duke was invited to become the first editor and we were off and running. Advances in Pulmonary Hypertension: the Official Journal of the Pulmonary Hypertension Association published it's first issue in 2002. It was a big name for a then small organization.

We were taking a huge risk for a potential large benefit. At the time of the Chicago meeting, PHA was an organization that just a year earlier had a total annual budget of $137,000. Now we were taking on the responsibility for a new project that would cost over a quarter of a million dollars per year. Some might say we were crazy.

As it turned out, the risk more than paid off. Advances has published regularly in the ten years since then, reaching over 40,000 cardiologists, pulmonologists and rheumatologists four times each year, providing leadership and education from world recognized experts. The field has grown considerably since Advances began publishing and I'm confident in saying that this journal has played an important role in that growth.

Now back to India... About 10 percent of the publication's distribution is sent to physicians in 63 nations outside the U.S. and international interest has been growing. Over the past year, PHA has received several unsolicited requests to license international distribution and translations of Advances.

The editorial committee, led by Dr. Erika Berman Rosenzweig of Columbia University has carefully worked out a template agreement for international licensing that protects the integrity of content and allows, with PHA's editiorial review and approval, the addition of some additional content relevant to the particular nation. Leadership of PHA's Scientific Leadership Council has approved the template.

Today, I signed our first agreement. An Indian edition of Advances will soon be published.

May it be as valuable to Indian physicians and their patients as Advances has been in the United States...and may it be the first of many such agreements.

People make change...

2011-09-01T16:18:00.000-07:00

We usually write about end points...the things that happened. The reality is that the outcomes and results we celebrate are most often built upon long and hard work. Today, my blog is about a year's long process that, in truth, began quite a bit before the 2006 event with which I open and will no doubt continue long after this month's victory with which I close...
In 2006, Carl Hicks (then PHA board chair-elect), Dr. Ramona Doyle (then at the Vera Moulton Wall PH Center at Stanford, Congressman Tom Lantos (who has since passed), our Washington representative Gavin Lindberg, myself and others went to the Department of Health and Human Services to meet with their leadership and discuss our concerns about the then new PH transplant standards. The new rules moved PH patients lower on the priority list...based on interpretations of information that our medical leadership and PHA disputed.

HHS was engaged and the meeting led to follow ups with the United Network for Organ Sharing (UNOS). UNOS is the private, non-profit organization that manages the nation's organ transplant system under contract with the federal government.

PHA's medical leadership worked hard to get it right and to build some appropriate flexibility into the system for PH patients. Their interest led to increased activity within the influential International Society of Heart and Lung Transplant (ISHLT) and, for the past several years, these doctors have been building a strong and active assembly within ISHLT and continuing to engage UNOS.

In early-August, PHA circulated the following message to over 600 physicians who are members of the PHA medical group, PH Clinicians and Researchers. (The LAS mentioned in the note refers to the Lung Allocation Score.)

Physicians PHA works with, who are also involved with the REVEAL Registry, gave a presentation at the ISHLT in 2009. Following that, UNOS invited them to speak to the thoracic council about their results on the LAS score. Dr. Ray Benza was then asked to be on the thoracic board and began to advocate changes in the LAS for PH patients. Dr. Benza reports that the Thoracic Board - particularly its current chair, Mark Barr - was very receptive. UNOS’ new policy on submitting lung allocation score exception requests for candidates diagnosed with PH appears below.

Dr. Benza has asked us to circulate this to the PH medical community as quickly as possible since it may impact current and future patients awaiting transplant.
PHA thanks and congratulates the physicians who have been building a rapidly growing and effective PH section within ISHLT, including Drs. Benza, Frantz and Park and others and Dr. Benza for his work on the UNOS thoracic board.

The change is partly described by UNOS, as follows:

Lung transplant candidates diagnosed with pulmonary hypertension (PH) and who meet the following criteria may qualify for an increase in their Lung Allocation Score (LAS):

1. Patient is deteriorating on optimal therapy, and

2. Patient has a right atrial pressure greater than 15 mm Hg or a cardiac index less than 1.8 L/min/m2.

We hope this decision will increase options for more patients living with PH and needing to consider the transplant option.

People make change. We benefit from their persistence and thank them for their dedication.

New Resource...

2011-08-16T12:57:00.000-07:00

One of the things that is most important at PHA is finding better ways to communicate valuable information to the patients, family members and medical professionals who are the reason for our work.

An example of that goal has just been released for caregivers…

Resources for Family and Friends is a free information packet designed especially for family members and friends of PH patients. It offers a range of opportunities to help caregivers plan their next steps, find important resources and connect with other caregivers.

It follows the also free Envelope of Hope packet which we created almost two years ago for patients…and which we are constantly upgrading.

Both packets can now be ordered online.

Medical professionals are able to help patients and caregivers get these packets by giving out referral postcards which can be ordered in quantity at no cost. The packets are particularly valuable for new patients and their families.

I’m particularly pleased that PHA is now focusing hard on building new ways to support PH caregivers.

Lian Latham, a nurse who has treated many PH patients, says it well.

“The families of patients are the true backbone support of PAH. They stand by the patients every day, providing solace and care to those who are in need. Often, they sacrifice themselves in many ways to make sure their loved ones get what they need. They are like the battlefield medics for PAH.”

PHA is glad to be able to help. Like PH patients, caregivers are not alone with this disease.

The story of a book...

2011-07-13T17:05:00.000-07:00

July 25 will be an important day for PHA. We will be publishing the new fourth edition of the Patients' Survival Guide. Watching the work of our volunteer writers and artists, the medical reviewers, led by Dr. Ron Oudiz, and PHA staff, led by Patti Lalley and Amanda Butts, I've been awed by the work that has gone into a major revision and addition to this 300 page patient and family treasure.

In considering about how to celebrate this accomplishment, I can think of no better way than turning to the words of the book's creator (and author of it's first three editions) - Gail Boyer Hayes - who also wrote PHA's history from its founding through 2000 (and, in the case of the Survival Guide, a little bit beyond).

Gail continues to write - novels now - and we thank her for what she began and, as you can see,others jumped in to make possible. She is another example of the difference a single person, willing to act, can make.

Today, PHA's Survival Guide, has been translated by teams of medical professionals and others from English into Japanese, Chinese, Korean, Spanish, Farsi and other languages.

We hope you enjoy the new fourth edition!

_____________________________________________________________

FIRST PATIENT’S SURVIVAL GUIDE PUBLISHED

Pulmonary Hypertension: A Patient’s Survival Guide

The Internet age was just dawning and most PH patients still did not have access to it. Even those who did lacked the sort of in-depth, accurate information they needed to cope with their illness and make intelligent decisions about which treatment options to discuss with their doctors. Both PH and its treatments were exceedingly complex. It is quite impossible for a patient with such an illness to remember everything a doctor tells him or her during an office visit, and equally impossible for a doctor to be comprehensive in the time allotted.

PHA decided, therefore, that patients needed a comprehensive reference book they could turn to for reassurance and for guidance.

PPH patient and writer/editor Gail Boyer Hayes (Seattle, WA) wrote the 123-page first edition of

Gail Boyer Hayes

Pulmonary Hypertension: A Patient’s Survival Guide, which PHA published in 1998. Before she was diagnosed with PPH at the age of 40, Gail had been working as a lawyer in California, Colorado, and Washington, DC. And before that, she had been a book reviewer, magazine and newspaper reporter, short-story writer, and television talk show hostess. For the six years following her decision to write the Survival Guide, the Guide and its updates consumed nearly all of her free time.

The medical consultant was the distinguished Dr. Bruce Brundage. Andrea Rich (the wife of Dr. Stuart Rich) did the medical illustrations. Other PH patients, doctors, nurses, and family members reviewed the book prior to publication to make sure it answered the right questions and explained things in language a layperson could understand.

Chapters included: What is PH?; So How Do I Know It’s Really PH?; What Causes PH?; Treating PH; Tell Me Doc, How Long Do I Have?; Children and PH; Living with PH, and Tedious Paperwork and Legal Matters. Cost of the 123-page Guide to PHA members was $10.00.

Gail was concerned that the Guide not be slanted to curry the favor of any commercial interest. Therefore, she did not turn over the copyright to PHA until she was assured of this. (It turned out not to be an issue; PHA also wanted a Guide that patients could trust.)

The Patient’s Survival Guide was an immediate hit and flew out the door. Olsten provided PHA with $1,500 to include a copy in the new patient packets. Many doctors bought multiple copies to give out to their patients.

Barbara Smith

PH patient Barbara Smith and her husband Vern, residents of Odessa, Florida, who had built up a chain of plumbing, cable, air conditioning, and electric businesses, mailed the Survival Guides and paid for postage out of their own pocket. Barbara was already familiar with PPH before she was diagnosed in 1995, because both her sister Rachel, and her daughter Angela, had died of the disease. When Angela died, she was pregnant with her third child. After Barbara became too ill to handle the mailings herself, the Smiths continued to pay for them. For at least 5 years they also mailed out membership packets, new patient packets, PH pins and cards, and other materials, and paid the postage on them.

Few patients realized the generosity that made their low-cost orders possible. Barbara once said, “I couldn’t figure out why I was still alive after losing my daughter and my sister. The only reason I can think of is to help other people.” Barbara survived until October 2005.

Slow Walker...

2011-07-06T16:24:00.000-07:00

For the past few weeks, Meghan Tammaro, who manages PHA's international work, has been in touch with Gloria Huanghuan, a PH patient in China. Gloria is organizing a new PH association there - iSEEK - which she hopes will complement the work being done by her doctor, who founded PHA China.

As you watch the video (begins about 10 seconds in in Chinese with English subtitles), you are watching Gloria and the story of her experiences with PH and in trying to form a non-profit organization to help patients and their families. What you will see is a segment of a longer film, titled Slow Walker, that she is making to help build awareness of PH and other rare diseases. The film is applying for the Sundance Documentary Film Program. We wish this talented young woman much success in sharing her story worldwide.

We also wish China a speedy path in sorting out out its laws and regulations for rare diseases and making it easier for NGO's to register. What Gloria is doing can only help its citizens with rare diseases such as PH as they are being helped in 51 other nations around the world.

The meaning of events...

2011-06-30T05:55:00.000-07:00

The First Annual Power for PH PHun Walk for a Cure from PHAssociation on Vimeo.

Last month, Jill Glenn called to say she was going to The First Annual Power for PH PHun Walk in Edison, N.J.

Jill is president of Glenn and Glenn Productions - producers of our Kilimanjaro Climb (2nd video on linked page) and Lil Long videos - and a good friend and member of PHA. Besides walking and raising funds for PH in her own community, Jill asked if we thought it would be ok if she and her team made a pro bono video of the event.

I know the quality of Jill's work and was excited. Glenn and Glenn are great listeners and their fiilms go beyond pretty shots to capture the meaning of what our community does.

So, the video is ready and here it is. I know how I feel about it...Jill and Doug and their team have taken the story of one event and presented a picture of why people do what they do across our entire community. What do you think?

Global partnerships...greater strength and knowledge for us all

2011-06-23T05:57:00.000-07:00

Several months ago, PHA announced the U.S. and international recipients of PHA's 2011 Tom Lantos Innovation in Community Service Awards. PH Israel was one of the awardees. Here is a note from Dr. Yosef Gotlieb to PHA's Senior vice president, Adrienne Dern, on the outcome of their project.

Dear Adrienne,

It is with pleasure that I am writing to let you know that the conference sponsored by the Israel Pulmonary Hypertension Association on Thursday, June 16th was a resounding success.

Nearly a hundred participants came to the meeting on "Pulmonary Hypertension: Profile of the Disease" to hear Israel's top experts lecture on the various aspects of PH: symptomatology, typology, diagnostics, therapies, and research horizons for treatment and diagnosis. The number of those in attendance was high despite a doctor's strike which required many senior physicians to substitute for younger doctors in the clinics and wards. Despite this, the auditorium was packed and we found ourselves having to add chairs throughout the first two sessions.

A panel on the complexity of care included a family physician, a mental health and support group worker, the director of a pulmonary rehabilitation unit at a children's hospital. a medical technology professional, and myself representing the patient's perspective. A vigorous dialogue ensued between pulmonary specialists and primary care physicians. The session ended with the promise of continuing exchange and engagement; as this was a major goal of the conference, we were very pleased to see this take place. We, the organizers and the participants who provided feedback, left the conference with the feeling that that the Israel PH community had been significantly expanded and strengthened by the conference and that there would be continuing impact on the target group we had sought to influence, namely, the primary care community.

Of those who attended the event, which was conducted in a decorous setting at a seafront Tel Aviv hotel, most were clinicians (physicians and nurses); a number of professors and heads of departments were also present. We have documented the meeting (some of the initial photos are attached) in stills and video and look forward to sharing our experience with other PH associations. We have already begun discussing possibilities for the next event to be held in what we hope will be a continuing series of meetings focused on professional and patient education.
On behalf of the Israel Pulmonary Hypertension Associationand myself, I want to reiterate how grateful we are to the sponsors of Tom Lantos Innovation in Community Service Awards and to Representative Lantos' family for enabling us to hold the event. Further, I wish to express again our gratitude to you and the Pulmonary Hypertension Association for facilitating our receipt of the funding necessary to implement this project.

We are much inspired and encouraged by the Pulmonary Hypertension Association. May you and the Association go from strength to strength.

Truly yours,

Yosef

Yosef Gotlieb, PhD

There's a lot more to read about the gvibrant and growing global PH community in the International section of PHA's website!

Ten Years Ago Today ...

2011-06-03T08:35:00.000-07:00

I met Bill and Laura O'Donnell and their daughter Shannon six or seven years ago when they volunteered to help staff a PHA table at an event at Tufts Medical School. Over the years our paths have crossed at PHA conferences and various Boston events and I've followed the family's activities through their support group, telephone support line, mentoring and other leadership and volunteer activities.

Yesterday, Bill posted an essay to the PHA support group leader list serv marking the tenth anniversary of Shanon's diagnosis with pulmonary hypertension. He titled it Ten Years Ago Today. I found it inspiring and, with Bill's permission, am sharing it with you.

Godspeed and thank you to the O'Donnell's.
_________________________________________________
For many Americans 2001 will always be memorable year. This goes for me as well. Most Americans will remember 2001 because of the tragic events of September 11. The day that makes 2001 memorable for me is May 31. May 31 is the day the world stood still and Shannon was diagnosed with Primary Pulmonary Hypertension. It is a day that changed life for Shannon, Laura and I forever.

Shortly after diagnosis, Shannon started on a continuous intravenous medication called Flolan. I believe Flolan saved Shannon’s life. In 2001 it was the only medication approved by the FDA for the treatment of PH. Today there are over ten medications. Flolan has to be kept cold. It only has a half life of three minutes which meant any interruption could cause a PH episode. About two years ago she switched to Remodulin, which has a half life of 3 hours making it safer. It used the same pump and does not need to be kept cold. In April 2011 she switched from her original pump, CADD, to a Chrono 5 pump. The Chrono 5 pump is much smaller and lighter pump. She is also on several oral medications. Doctors believe combination therapy may be the best treatment available. I still hope and pray for a cure other than a double lung transplant.

How do you represent ten years? To some ten years is a decade. To others it is a half score. To me ten years is represented by three thousand two hundred eighty five mixes of life saving medicine. (8 years of Flolan, 2 years of Remodulin) This includes 2080 AA batteries, 3285 cassettes, 6570 needles and syringes, 32,850 alcohol wipes, and 328,500 ml of diluent which is equivalent to 164 two liter bottles of tonic or 87 gallons of milk. The average mix takes about twenty minutes which means 65700 minutes or 1095 hours or 46 days have been spent just mixing medicine. This does not include other time required for Shannon’s care.

During the past ten years, we have welcomed one member into our immediate family, Matthew, and many into our extended family. Sadly we have also said good-bye to several family members including Anna, Alice, Anita and Marion (four out of five of Shannon’s grandmothers), Grandfather (Ray), Uncle Tommy, Aunt Barbara and Uncle Jim.

Over the past ten years we have personally witnessed the best in humanity. On a large scale Shannon was granted a Make-A-Wish trip. She trained dolphins and fed Shamu. We stayed a special resort called Give Kids the World which was founded specifically as a place to stay for kids fulfilling their wish to the Orlando area of Florida. Shannon has also been blessed to be a camper at The Hole in the Wall Gang Camp, THITWGC, founded by Mr. Paul Newman. Paul’s vision was to provide a place where seriously ill children could be kids and raise a little hell. This summer will be Shannon’s eighth and final year. She is already talking about being a counselor.

We have attended countless shows through the generosity of others. These include performances by the Boston Ballet and the play Wicked, which Shannon loved so much she downloaded the sound track the very next day. We also attended several sporting events and met several Boston sports stars including Jason Varitek, Josh Beckett, Tim Wakefield, Big Papi (David Ortiz), and Raymond Borque.

I have attended more concerts in the past few years than the rest of my life combined. It started out with The Cheetah Girls with Ali & AJ. Next was the Jonas Brothers, my ears are still ringing from the sound 18,000 girls screaming at the top of their lungs in the Garden. This includes Shannon; you would never know she has a lung disease if you heard her scream. Just to change things up we attended a DropKick Murphys concert after Shannon filmed a public service announcement for Children’s Hospital with Ken Casey and Scruffy of the band. Honor Society was next. Most recently Shannon and I attended a Ke$ha concert at Babson College which was a standing room concert. We arrived early and wound up in the second row. We lasted two songs before I made Shannon and her friend move to the back. Although I joke about the screaming girls at the Jonas Brothers and all but being crushed at Ke$ha I will cherish the memories forever! At times I even feel sorry for dads who never have these experiences with their daughters.

This outpouring of generosity to us only makes us want to give back to the community. We have shown our appreciation and support to Children’s Hospital by raising money through its Miles for Miracles program, allowing Shannon’s image and words to be used to promote the hospital and perhaps most importantly donating blood, something everyone should do, to help patients in need. The staff of THITWGC knows all they have to do is call and if we are available we will be there to help out doing whatever is needed. Sometimes this is just being at camp on opening day to support parents who are dropping off a child for the first time and have not come to realize what a special place camp is.

Another organization that we have come really to appreciate is the Pulmonary Hypertension Association, PHA. PHA seeks a cure and prevention of PH. It provides hope to PH patients and their families. PH has given us hope with dealing with Shannon’s illness. In return Laura and I assist the organization by being mentors, help line volunteers, parent advisory members and assisting with the bi annual conference.

In thinking about this ten year anniversary I started to hum Thanks for the Memories. The song Bob Hope would sing at the end of his shows. Although I do not feel the end is near. Here is my version.

Thanks for the Memories, 10 years

Thanks for the memories

It’s been ten long years

We’ve stood and faced our fears

We were newbies

Now were oldies

We’ve even shed some tears

How terrifying it’s been!

Thanks for the Alphabet

Test like EKG’s

RN’s and MD’s

The CHB (Children’s Hospital Boston)

The PHA (Pulmonary Hypertension Association)

The THITWGC (The Hole in the Wall Gang Camp)

Especially U!

We’ve had our ups and our downs

Sometimes we’ve even gone round and round

Thanks to you we’ve never hit the ground

We shall not rest

For a cure is best

Here’s to the future

Days without mixes

And concentrator hisses

Celebrations

Graduations

Docs with all the fixes

How wonderful it will be!

As we celebrate this tenth anniversary I want to thank you for whatever you may have done to make Shannon, Laura and my life more bearable. Even if this was just to say a prayer or wish good thoughts on us. Please take a moment today to thank God for all of the blessing He has bestowed on us. Tomorrow I ask that you once again keep us in your prayers as we head to driving a car, high school graduation, college and many, many more years. And of course do not be afraid to ask Him to provide a cure.

BillfromBoston

Dragonfly Heart Camp

2011-05-31T16:25:00.000-07:00

It's been awhile since my last blog. There's so much to write about during recent travels to the American Thoracic Society and NHLBI's Patient Interest Organizations meeting...but none of that is my subject today.

Instead I want to tell you about Dragonfly Heart Camp.

Located on the Eastern Shore of Maryland, it's for kids who have received a heart and /or lung transplant, or are diagnosed with Pulmonary Hypertension.

Like many great ideas, the camp was organized out of one person seeing a need and being driven to meet it. Congratulations and thank you to Rhonda Cataldo for bringing this important idea to reality and to Brian Hanna, a PH pediatrician at Children's Hospital of Philadelphia and a good friend of PHA, who leads the medical program.

That's Dr. Hanna in the picture to the right, wearing a medication pump on his head so a camper can swim. How cool is that!

Here's a Dragonfly video you won't regret watching.

Oh, and, if you're as moved as I was, here are some upcoming events.

PH Professional Network...another step forward

2011-04-29T14:58:00.000-07:00

PH Resource Network was launched as PHA's first medical membership group at the 2000 PHA International Pulmonary Hypertension Conference. As we went through that first meeting in Chicago, we knew what our greatest hope was for the group. It was that it would grow as a collaborative center for what we anticipated would be a growing medical field...a field that would develop with strong educational opportunities and effective clinical networking for the benefit of patients.

Has that happened?

Well, since 2000 the number of medical professionals working in the field has grown 60-fold. PH resource Network has grown from primarily RNs to an increasing number of other allied health professionals, PAs, NPs, pharmacists, respiratory therapists and others. Well ver 900 members so far!

To recognize the broadening of their membership and the development of programming across the range of professional interests, last month PH Resource Network changed their name to PH Professional Network (PHPN).

Today, they posted four new videos on their website to encourage all allied health professionals in the field. Here's one...feel free to watch the rest.

Rev. White Comes to Wahington...

2011-04-06T06:50:00.000-07:00

This week, PHA Board member Steve White came to Washington to help get the PH Research and Education Act introduced with a good number of original sponsors. This is his story. If you'd like to to what you can to help advance our common cause through contacting your member of Congress (in your own community) or creating media awareness, contact Elisabeth Williams, PHA's Grass Roots Campaign Associate.

________________________________________________________________

I don’t know about you, but whenever I hear the First Amendment of the Constitution mentioned on the news I usually think of freedom of religion, freedom of speech, a free press, and our right to assemble. But it is when I exercise the last clause of the First Amendment that I am most aware of how unique our form of government is and of how proud I am to be an American. I am referring to our right to petition the government for redress of grievances.

I took full advantage of this right on Monday, April 4 when I joined our friends Gavin Lindberg, Katie Kroner, and Rino Aldrighetti on Capitol Hill to visit the offices of my senators and congressman from Massachusetts and other members of the Massachusetts congressional delegation to seek their support for the Tom Lantos Pulmonary Hypertension Research and Education Act of 2011 which will soon be introduced by Rep. Kevin Brady (R-TX) and Senator Bob Casey (D-PA).

It was the perfect day to be in Washington. It was warm and sunny and the cherry blossoms and flowers were at their peak. And the reception we got from various congressional staffers was just as warm. Some of you may have met Sara Mabry, Sen. Casey’s legislative aide, at the Congressional Luncheon. She is fully committed to helping us get our bill passed and is working closely with the senator and with Mr. Brady’s office to get the bill introduced within the next week or so.

My congressman, Rep. John Olver, has been a long-time supporter of our efforts and his staffer assured us that he will be an original co-sponsor this time as well. When we visited the office of Rep. Jim McGovern (D-MA) the congressman himself came out and said “What’s up?” Gavin summed up our plea for him to be an original co-sponsor in less than 25 words and dropped the name of Tom Lantos whom he knew had been a close friend of McGovern’s. At that Mr. McGovern exclaimed “The answer is yes!”

Other staffers we met listened attentively as we told them what PH is and why this bill is so important. I told them about my daughter Christen and how she had lived with PH for some time before she was finally diagnosed, in spite of many visits to the doctor for shortness of breath and other symptoms that I now know are classic signs of PH. We explained how the bill will help educate doctors and the general public about PH so that the disease can be diagnosed as early as possible and thus prolong life. At the end of every meeting we asked the staffer to urge his or her boss to become a co-sponsor of our bill. And I reminded them that I’m from a huge French-Canadian family spread all over Massachusetts that really wants this bill passed. In fact, I think Gavin had the impression that I had more cousins at the end of the day than I had in the morning! It was an exhilarating day and a successful one.

Each of us has the right to do what I did on Capitol Hill. We all have the right to ask our government to help us solve problems that none of us can solve alone. Who else but the government would do anything to educate the public about a disease like PH? Who else but the government would focus research efforts on a disease that is unlikely to make big fortunes for drug companies?

So if you happen to be in Washington, or if you can make a special trip there like I did, drop in on your representatives. You’ll be surprised at what a warm reception you’ll get. Tell them your own PH story. Ask them to support our bill to fight PH. You’ll make a big difference and you’ll feel the pride in America that I felt when I visited Capitol Hill on April 4.

Eating bugs in Texas...

2011-04-01T16:38:00.000-07:00

Last weekend, I was in Texas for the Woodlands CrawPHish Festival. It's a great event that started out in 2008 under my all-time favorite event name - the Cure PH Bug Boil.

But there's more to the history. In 1999, Jack Stibbs connected with PHA and said he and his family wanted to organize a golf tournament for PH research. It would be PHA's first large-scale event.

Jack and his wife Marcia's daughter, Emily, was diagnosed with PH two years earlier, when she was five years old. I met Jack and Marcia that year when they and I both attended our first board meeting. That was a dozen years, 10 golf tournaments, a few galas and 3 bug boils/crawPHish festivals ago. In the intervening years, Emily has grown up to be a lovely young woman who is now attending college and the events that this amazing family, including son Jake, and their devoted and driven team of volunteers have produced have generated over $1,800,000 for pulmonary hypertension research!

Jack will be the first to tell you that a true backbone of all these events is Matacha Saul. Matacha began work with Jack as his legal assistant three months before their first event and was immediately (and willingly) drafted into working on that first golf tournament. Today, she is the firm's office administrator, marketing coordinator and Jack's legal assistant. Somehow, with all that, she is able to keep these amazing events going and growing. At PHA's 2010 International Pulmonary Hypertension Conference, she received the Julie Hendry Memorial Award for her extraordinary efforts over the years. This year's effort - the CrawPHish Festival - drew over 3,500 happy bug-eaters, up from 2,000 last year!

Here's Matacha telling us why she does what she does. We are so very grateful.

Oh, and when this video is over, you might want to take a look at the other short video interviews I did with some other great folks (love that FlipCam!)...

More from PHA Norway...

2011-03-21T10:16:00.000-07:00

PHA Norway from PHAssociation on Vimeo.

On March 14, in a blog titled, "Honoring his father...", I mentioned Hall Skara's mountain-climbing video which he presented at our June 2010 International Conference. Today, Kathy Frix finished converting that video and you can find it on our International Faces of PH page or by clicking the video on this blog.

I thought you'd like to see this...and the other rich content on PHA's international web pages.

Japan...

2011-03-17T15:22:00.000-07:00

Our hearts go out to all those involved in Japan's unimaginable disaster...particularly our friends at PHA Japan.

I met Noriko Murakami, PHA Japan's founder in 2000 at PHA's International Conference in Chicago. As she tells in her story of the organization's formation, that was shortly after they had formed.

It was also shortly before I had an extraordinary visit to Japan.

Ten years and one month ago - in February 2001 - I represented National Voluntary Organizations Acive in Disaster (NVOAD) on a 12 day speaking tour of Japan, concluding in Sendai.

That tour was my lsat piece of consulting work before converting from a part-time exeuctive director at PHA to full-time ED and, later, president.

Over the past few days, as I have watched the devastation on television, I have been thinking a lot about that trip and the wonderful people I met. While I was working as a consultant ED for PHA, I was also in the same position for NVOAD, an umbrella organization for the major non-profit disaster response organizations in the U.S. The group was built on the simple idea that the best time for disaster responders to meet and plan is before the next disaster strikes.

Well, that's the background. The story is a diary I kept during that trip and later posted on the NVOAD website (webmaster was among my duties there). It's been long down but Kathy Frix at PHA revived it for me. If you do want to take a look, my experience at the podium in Sendai may be worth a quick read.

Tomohide Atsumi organized NVNAD after the 1995 Kobe earthquake. He once told me that up until that event, the expectation in Japan had been that government would come in and solve the problem...but the Kobe disaster was too big. His role and that of others has become to introduce the concept and practice of volunteerism into the culture. To the extent that they have succeeded, the country will benefit as they move through this yet unfolding tragedy.

Dr. Atsumi, a professor at Osaka University, returned to Japan from his position as a Fulbright Visiting Scholar at UCLA the day after the earthquake struck.

On Monday, he sent out a long situation report. It closed with the following...

At this phase of disaster, and being in the area, it is hard to think of any "academic" issues unless they are truly practical. It is, at least, obvious that we should re-examine our concepts of society, culture, civilization, safety, sciences, and meaning of life. I hope that you input us any/many ideas to think for (future) academic contributions from various areas of the world.

Let me go now. I have to go to the office and respond. Today, I will discuss when/how/whether/where to dispatch our team (including me), develop programs for volunteers now and in long-term, reply to many supportive messages from people in Japan, and talk at two TV programs and one radio program...

Thank you for your attention.

Good luck Tomo. Good luck Japan.

A new step forward in pediatric medical education...and a growing concern

2011-03-15T09:50:00.000-07:00

Last week, I wrote that Caitlin Flewellen on our Medical Services staff and I would be going to San Francisco for the Fourth International Neonatal and Childhood Pulmonary Vascular Disease Conference.

I had attended last year's meeting in Banff and was impressed at how much of the programming focused on pediatric PAH. It struck me then that the pediatric field was progressing rapidly, much as the broader PAH field was developing two decades ago.

As we thought about how we could help with this acceleration, the idea of filming those sessions where speakers were agreeable and posting them with educational credit on PHA Online University emerged.

Thanks to the active support of Dr. Jeffrey Fineman, Conference organizer, Matt Trojnar and PHA SLC members, PAH pediatricians Dunbar Ivy and Erka Berman Rosenzweig, we were able to work out an agreement and get word out to the 31 speakers. We were also able to work out an arrangement with the University of California at San Francisco to make it financially feasible to re-purpose the talks for educational credit.

We contracted with Fleetwood the same company that did such a great job filming sessions at the PHA International Conference last June. I love their presentation tool which syncs slides and speaker video. Here's a sample from Conference.

By the time we had made these arrangements, we were within a week or so of the Conference start. Our e-mails to the speakers generated 11 positive responses. So, we went to the Conference with some nervousness.

Caitlin was invited to sit at the registration desk and connected with speakers as they arrived. By the time she was done, speakers agreed to be filmed in 28 of the 31 sessions!

We believe this success, besides making a great deal of pediatric medical education available online and publicizing the value of this Conference, will be groundbreaking as a model for the filming of other valuable events.

Because we have given the physicians review rights on their filmings and because we have to go through CME review, the presentations won't appear immediately but we're hoping to have them up within four months.

As a cautionary aside, one disturbing factor in this march toward the development of pediatric medical education is a new FDA rule which requires that pharmaceutical industry support can only be provided for pediatric medical education if the supporting company has an approved indication for the pediatric use of their product. In the case of PH (and we are not alone, given the FDA's caution in allowing pediatric trials), all approved drugs are being used off-label for children.

So a question must be asked of the FDA...

If the pharmaceutical industry is being regulated out of providing support and we already know that neither government nor academia are willing or able to provide such support, are physicians to be condemned to restricted knowledge in the name of purity?

As this Conference's funding is being threatened, PHA has offered to do our best to help but the problem is a rapidly growing one and our own resources are limited.

We will do our best to help and fulfill our mission in the face of a regulatory system that is more and more ignoring the (unanticipated and damaging) consequences of its actions.

We are simple people, trying to do a simple thing...and I'm convinced it is the right thing.

Honoring his father...

2011-03-14T10:34:00.000-07:00

PHA Norway President, Hall Skåra sent us this video earlier today. Those of you who were at PHA's 2010 International Conference may have met Hall and his family or remember his great mountain-climbing story from one of our plenary sessions.
Hall's son, Nils-Paul (a former guard at William and Mary in Virginia) is now back home, continuing to play basketball and using his talents to help build PH awareness in Europe.

As you'll see from the video, Nils- Paul's whole team Baerum Basket played a key game (they won!) with Blue Lips as part of PHA Europe's effort to mark Rare Disease Day and to honor Nils-Paul's father.

They created a lot of publicity about the event in pre-game newspaper ads, local articles and an appearance on national TV. Now that they’ve just made it to the semi-finals, there should be even more interest!

It's a great story. Many thanks to our friends in Norway for subtitling the video in English (and to Bayer for helping PHA Norway get it made) and sharing it with us here in the U.S.

Oh, and for those who'd like to learn a little more about PHA Norway and hear Hall's thinking on developing patient education as an empowerment tool, you can see and listen to his presentation at our International Leaders Symposium this past June.

Leadership meetings...

2011-03-09T15:30:00.000-08:00

Last Wednesday, I flew to Orlando, Florida for a meeting marathon.

Twice each year PHA's Board of Trustees meets face-to-face. Often, because there are connections between our board, Scientific Leadership Council and PH Resource Network Executive Committee we hold these meetings in sequence. It's a lot of work but builds connections across PHA's various leadership structures and saves on travel costs.

All three meetings (plus a few committee meetings) were held in sequence this time for a special reason. Our meeting site was also a test of the site for our 2012 International PH Conference and Scientific Sessions (June 22-24, 2012). The Renaissance Orlando at Sea World looks like it will be a great host for our community.

The PH Resource Network was the first of the meetings, held all day on Thursday. A big part of that conversation was the 2011 PH Resource Network Symposium which will include almost 30 sessions for allied health professionals. Another important discussion was held around the group's rapid growth. PH Resource Network is a professional association within PHA for allied health professionals. With over 900 members they have grown to include many specialties (pharmacists, respiratory therapists, physicians assistants, nurse practitioners, and so on) beyond the RNs who were the original members. Building programs and a welcoming environment within the group's umbrella is becoming increasingly important.

On Friday, PHA's Scientific Leadership council met for a rich and full day. Their focus was a review of our current research programs, our medical education programs and providing more valuable information for patients and their families in how to work with their medical professionals.

The PHA Board met on Saturday and Sunday, discussing our goals for the year and much of our organization's wide-ranging programming. An interesting aspect of the Board is that it interlocks all components of PHA for better and broadly viewed decision making. Patients and family members participate with physicans from the SLC and allied health professionals from PH Resource Network.

The board was able to meet with members of the Orlando support group and a dozen support group leaders from around the state. Fifty-two support group members attended. There is no question they will be great hosts for our Tenth International PH Conference..as will Dr. James Tarver and his great team at the Orlando Medical Center. Dr. Tarver attended the board meeting with his nuse practioner (and PH Resource Network executive committee member, Melisa Wilson.

The entire board was very excited about the meeting possibilites we saw in the hotel. It will be great to come back to the state in which PHA was founded for our 2012 Conference.

I'd like to write a lot more but I have an early flight to San Francisco tomorrow for the Fourth International Neonatal & Childhood Pulmonary Vascular Disease Conference. PHA will be filming many of the sessions to provide pediatric medical education on PHA's Online University website.

We do keep moving...

We will miss you, Lynda...

2011-02-28T08:28:00.000-08:00

John McInnis, a PHA Mentor, wrote to PHA staffer Emma Bonanomi Sunday night with the very sad news of his wife, Lynda Lynda Bériault's passing. Lynda organized the first Quebec support group and was a founding director of PHA Canada and a dedicated advocate for PH patients in Canada, the U.S. and beyond. She was a friend and we will miss her.

John's note is today's blog...followed by Lynda's appearance (1:45 seconds in) on a video from our 2006 Conference and a 2004 video in which Lynda and her doctor, David Langleben talk about her/their journey with PH.

Hello Emma,

Last Thursday, my wife, Lynda Bériault passed away quietly during the evening. Lynda was surrounded by all her family and suffered no pain. My son Matthew and I were able to say all we had to before she left and we spent the entire day chatting with her about the wonderful things we did together. Lynda was an accomplished woman to overcame her illness to start the first Quebec PH support group – all on her own. Lynda was also a founding director of PHA Canada and spoke with other PH support groups in Canada, the US and Internationally. She was a champion of PH patients rights, her cherished French language and all those who could not speak for themselves. I know she touched many lives and helped many families during her life as both a teacher and a PH support leader. The stories I will eventually tell all those who are interested, are inspirational and touching, human. She will be greatly missed and I know she is watching over all of her family, friends and the PH community.

John McInnis

Lynda (1 minute 45 sec. in) at PHA's 2006 Conference...

Lynda at PHA's 2004 International Conference with her physician, Dr. David Langleben.

The Blue Lips Disease...

2011-02-25T12:26:00.000-08:00

When I began work as PHA's first staff person in 1999, one of the first things I saw was our purple ribbons. Bonnie Dukart told me that purple - or periwinkle, to be exact - had been chosen because it represented the color that could be seen on some patients' lips...a color caused by oxygen deprivation.

More recently, our friends at PHA in the United Kingdom, decided to turn this reality into global awareness of PH. They proposed a Pucker Up for PH Campaign to break the world record for kisses collected through the Guinness Book of World Records.

PH associations throughout the world jumped in and collected kisses...and, as they did, told the story of "The Blue Lips Disease". Here, in the U.S. for well over a year, kiss collection became a fixture at PHA special events and in many other places.

We learned on February 18, 2011 that, working together, the global PH community had shattered the old record of 39,547 kisses - a record that had stood for 10 years. The PH community's new record is 54,949 kisses...and a whole lot of PH awareness...and, perhaps, a new way to describe this disease to a more interested world.

The fun (and valuable) video below from our St. Louis support group members is one of my favorites on this subject. I hope you enjoy it, too! Oh, and don't miss Patty Kaiser's story on how she got this media interest. You can find it on her February 23 posting on PHA's Support Group Blog and another great web video featuring the St. Louis lips!

Holding true...

2011-02-10T14:26:00.000-08:00

Are we who we started out to be?

Here - in its entirety - is the lead article from the third issue of Pathlight, published in November of 1990. It was written by PHA co-founder Teresa Knazik and appeared under the title, Pathlight Grows...but it was about a lot more than that. See what you think.

Welcome newcomers. We now have 35 members and anticipate many more in the coming months. Over 100 copies of Issue #3 have been mailed, and many members are sharing copies with physicians and organizations in their communities, helping to spread the word about us. Several of our new members are patients of Dr. Rich at UIC Medical Center, and I want to thank Lisa Kaufmann, RN for making copies of Pathlight available to those patients.

Would those who have so generously volunteered their time and talents please let me know what skills you can offer? Soon we will form committees to begin working toward our goals, and we will need leadership and committed individuals to do this. Please share any ideas that you may have to further our efforts. We are hoping to incorporate before the end of the year, and our goals are:

...to organize a national patients' association with regional and local support chapters.

...to make Pathlight accessible to those who need it but cannot afford it.

...to help family, friends, and each other understand the pain and fear we experience - coping.

...to educate the public about our disabilities.

...to promote awareness among family physicians who can aid in early detection.

...to encourage research and become informed of research in progress.

...to form a "collective voice" so that our needs may be heard among those who have more well known disorders.

As I was reading this article, the new issue of PHA's medical journal, Advances in Pulmonary Hypertension arrived. In his editor's memo, Dr. Richard Channick focused on the Scientific Sessions held at PHA's Conference this past June - and the Conference itself - and he writes:

Not surprisingly, the evolution of Conference perfectly mirrors the growth of PHA itself. The iconic image of 4 people sitting around a kitchen table has morphed into a major organization that provides a dizzying array of services to patients, develops and implements many invaluable educational programs and funds both basic and applied research. A remarkable evolution!

PHA has evolved but I'm very proud that, despite the changes in scale, we have stayed true to the thoughtful and solid foundation our founders provided.

Thanks to Pathlight's current editor, Megan Mallory, you can now read the first three issues of Pathlight. When you get to the page, scroll down to Back to the Beginning.

Research...

2011-02-08T08:35:00.000-08:00

I talk a lot about PHA's four distinct research programs and the partnerships we have developed. PHA is proud that in this small disease over a million dollars in research funding is provided through them each year.

What I don't talk a lot about is how much additional PH research funding is generated through our advocacy work.

Dr. Lisa Taylor's work is a great example.

In 2005, PHA began to look at the Department of Defense (DOD) medical research program. Gavin Lindberg, who does a lot of our Capitol Hill work, began to collect letters from PH patients and family members in the military, explaining the importance of PH research to them. (That's Gavin on the left, receiving an award from PHA's then Board Chair, Carl Hicks, a retired army Special Forces colonel.) In 2006, PH was listed for the first time as a disease eleigible for DOD research funding.

Today, Gavin wrote to let us know about Dr. Lisa Palmer at the University of Virginia who has received a grant for $946,875.00 to study aspects of pulmonary arterial hypertension. Read about her grant.

Advocacy can't do the reasearch. It can't guarantee the creation of excellent research projects. However, in a growing field with bright researchers, we can and do open doors and make new opportunities available.

Like our internal reseaearch programs, that's something to be very proud of, too!

Busy day in Greater Washington...

2011-02-02T16:24:00.000-08:00

Today was supposed to be a big ice storm in Washington DC...but the temperature held above freezing because we had a lot going on outside the office.

At an 8:00am breakfast in Bethesda, Maryland I had a chance to introduce Candice Abate, our new VP for Medical Services & Patient Education to PHA Board Chair, Laura D'Anna. Laura was in town for an NIH meeting.

After that, I headed up the road to Congressman Chris Van Hollen's office in Rockville.

He is our local Member of Congress and PHA volunteer Conchita Watson had written him a letter during November Awareness Month telling him she wanted to talk to him about PH...and received an invitation in response. The rest of our group was her friend and fellow patient, Georgia M., PHA's Advocacy and Awareness Director, Katie Kroner, our Washington rep, Gavin Lindberg and me. It was a great meeting with Conchita and Georgia telling our Congressman what it is like to live with PH. He was very interested in learning about the disease and we were able to give him a lot of information. Our big issue was the reintroduction of our bill in the House and Senate (Katie and Gavin have been working with Senator Casey and Rep. Brady and others on that). After we spoke, he told us he had read the bill and was glad to co-sponsor and would help to move it along! We will be following with his staff on that and another issue.

While that was going on, Debbie and Dr. Steve Mathai from Johns Hopkins were across the District line to do their interview on the show I blogged about yeasterday. I was able to listen to the Kojo Nnamdi Show...and you can, too! Once you click the link to the show's page, drag the white time line on the black bar to 24:33 to catch the start of the segment.

They were a great team, joined by Dr. Gregory Kato from NIH. Many thanks for helping to expand awareness of this disease.

...And what a relief we didn't have to cancel all this for ice!

Debbie, Dr. Mathai and Kojo...

2011-02-01T16:30:00.000-08:00

First it was PHA board member Steve White, Generation Hope leader Coleen Brunetti and Yale's Dr. Terrence Trow, now PHA's own Director of Volunteer Services, Debbie Castro and Johns Hopkins physician and PHA research award grantee, Dr. Stephen Mathai are hitting the NPR airwaves.

Here are the details about tomorrow's show...

The Pulmonary Hypertension Association will be on the Kojo Nnamdi Show, a local D.C.-area National Public Radio (NPR) program, on Wednesday, February 2 at 1 p.m. ET. If you are local you can listen on the radio at 88.5, otherwise listen online at www.WAMU.org. With 700,000 listeners, the show will help us raise awareness about the disease and PHA's work with the PH community. They are dedicating the entire show to pulmonary hypertension, and the program includes a listener call-in segment, so get your questions and comments ready!

Show Details

Kojo Nnamdi Show

Wednesday, February 2

1:00 p.m. ET (will probably begin around 1:15 p.m. ET)

Listen: WAMU, 88.5 OR www.WAMU.org

Panel: PHA staff member Debbie Castro, PH specialist Dr. Stephen Mathai from Johns Hopkins, and Dr. Gregory Kato of the National Heart Lung and Blood Institute

Includes a listener call-in segment: 800-433-8850; anyone can listen and call in

Telling the story...

2011-01-25T15:28:00.000-08:00

Without our stories, we are unknown.

Without our stories, no one cares.

That's why building awareness of PH is a key element of our work.

For over a year PHA has been working on a connection with the New York Times. Last week, PHA patient and advocacy and awareness volunteer extraordinaire, Diane Ramirez, broke through...in a big way. She proved the power that one person with a compelling story has to make a differnce.

Patient Voices is a well promoted and highly trafficked feature on the NYT website. And Diane's voice is now there and can be heard loud and clear.

Yesterday, Diane wrote to say that she had just completed another interview with Health Monitor magazine that is expected to be ready for the February issue. She's now training her sights on Ladie's Home Journal and Woman's World. Go Diane!

Like anything else, building awareness is a learned process. It's something anyone with the interest can do...and PHA can help. If you are interested in finding out how you can get involved in getting your local media intersted in talking about PH, visit the PHAware pages on PHA's website or contact Elisabeth at PHAware@PHAssociation.org for tips, ideas and free media materials.

And the media isn't the only place you can tell your story. Over 200 are posted in the Our Journeys section of the PHA websire...and with the click of a button, you can post yours there, too.

A note about Pathlight...and a few more words

2011-01-19T10:57:00.000-08:00

This morning, the first e-mail I saw was from John Hess. John whose son is a patient has been a volunteer on a number of projects and activities over the years and, more recently, has joined the PHA board of trustees.

He wrote...

Very rarely do I get down to sit down, relax and read. Tonight I had that luxury and did so with the most recent Pathlight.

As I read Pathlight, I'm inspired by the messages of progress and hope contained within it. I see PHA adding new services and programs with dedicated and inspired staff. I see committed caregivers and patients spreading the word about PH. I see healthcare providers suggesting strategies for transitioning PH children from pediatric to adult programs. I see an entire community of people, separated by geography but bound together by a common cause. It's inspiring and an amazing thing to be a part of.

Of course, it's always nice - and often moving - to receive notes like this. It also helps us to know we are hitting our targets.

Pathlight was edited by patients and one caregiver for the first 16 years of its existence. This began in May 1990 when Teresa Knazik, one of PHA's founders, launched the first issue (see left). She served as editor through 1994. For awhile, she co-editied with another patient, Patricia Murphy. Then Pat's husband Mark Taylor Murphy was editor through 1996 when another patient, Jan Travioli, took over. Shirley Craig was the last patient editor, serving from 2000 to 2006.

There was a one-word reason Pathlight editing moved from a volunteer to a staff role in 2006. Growth. By the time of its transition, Pathlight had grown to a 40 page per quarter publication.

The real challenge for PHA was keeping the community's voice loud and clear. Christine Dickler became the first staff editor and began her task by extensively surveying and interviewing many patients, caregivers and medical professionals. She learned that the key issue for patients was that they wanted to hear as much as possible about how others are living with PH. That has been implemented by including members from throughout our community as subjects of stories and writers. As a matter of fact, Christine segmented the publication with a Users Guide that appears in every issue. The backbone around which each of the issues is built includes the following sections: PHenomenal Lives, Health Matters, Advancing the Cause, Community Classroom, PHenomenal Youth, and Family PHocus. All are written to offer what our readers have told us is important to them.

When Christine left the editor position (first to go to gradiuate school, then to return to lead our International Services department) Megan Mallory took over as editor. She maintains the same commitment to getting the story of this community out in ways that bring value to those whose lives are touched by this disease.

John, thank you for noticing.

As we begin...

2011-01-06T06:33:00.000-08:00

Five days into the new year, we had our first big meeting.

In 2011, PHA will deliver over three million dollars of medical education across five programs in our Medical Education Fund. This is extremely important in a field where the number of treating physicians has grown from about 100 to well over 6,000 in little more than a decade. It is important to expand knowledge of diagnosis and treatment and to connect medical professionals with experts in the field.

With two medical associations (one for physicians and researchers, the other for nurses and other allied health professionals) operating under the PHA umbrella, the organization continues to be in a great position to deliver this knowledge in ways that help to improve practice in the field.

PHA manages several of these programs directly but also uses contractors to provide support on logistics and slide development.

Today, we met with our primary contractors to finalize plans for 2011 programs.

Long-time board member Jack Stibbs flew in from Houston to join us. As our volunteer (thank you Jack!) attorney, Jack has guided PHA through a decade of important legal agreements and he was here today to help us again.

This time Jack came with his daughter Emily, now a college freshman. One of the great joys of our work here at PHA is seeing young patients grow to young adults...and indeed Emily, who was diagnosed at age six is one of those.

...and it was great to have her help our Patient Outreach and Services staff, Emma and Michal, review our programs for young patients.

All in all, today was a very good day...a very good start for the year.

So, thanks again to the Stibbs family. That's Jake, Marcia, Jack and Emily in the picture - at the Crawfish Festival they organize every year to support PH research. Their next one is March 26, 2011!

A radio pucker..

2010-12-13T13:48:00.000-08:00

A lot's been happening internationally...

Last week, Christine Dickler - Associate Director of our International Services program - sent me a link to an interview she did with PHA-UK's radio show (hosted by Paul Pennington) on our participation in their global Pucker Up for PH Campaign.

You can listen to the interview from this link by scrolling down to "Select a Show", clicking on Episode 9 and then segment 4. After the segment starts playing, drag the sound bar to 5:25 for the introduction and, almost a minute later christine's interview. Phew - a lot of work - but worth it...and you might be interested in the other programming, as well!

The Campaign is counting their worldwide responses now. It will take 40,000 "blue lips kisses" to break the Guiness record and we're all waiting to see the results. All we know that, led by Puerto Rico, well over 10,000 have been sent in by the U.S....and, whatever happens, this has been a great international partnership to build awareness in PH!

And thank you to our friends in Brazil...

2010-12-13T10:59:00.000-08:00

In my last blog, I wrote about Debbie's trip to the ABRAF Conference in Brazil. We've since heard more about her welcome and the work of our South American PH partners. And, we were surprised - and thrilled - when she returned with an award for PHA from the Brazilian PH Association. Our sincere thanks. We look forward to our continuing progress together.

Our partners in Brazil...

2010-11-29T06:03:00.000-08:00

PHA's Director of Volunteer Services, Debbie Castro, spent the Thanksgiving weekend in Sao Paolo, Brazil.

She had been invited to speak at the third annual conference of the Associação Brasileira de Amigos e Familiares de Portadores de Hipertensão Arterial Pulmonar (ABRAF), one of 50 PH associations PHA works with worldwide.

Here is Debbies first report about her experience:

There are about 55 people here at the Third annual meeting of ABRAF.

For a patient to get on treatment in most states of Brazil, they must take legal action and sue the state to pay for treatment. 25 of 27 states don't recognize PH in their treatment protocols.

Paula Menzes lost her mom to PH and founded the organization 4 years ago. Debbie reported that Paula's father, Paulo, was an excellent MC for the event. They both speak English, Spanish and Portuguese. That's Debbie on the left, Paulo in the center and Paula oon the right.

We value this and all our international partnerships in the fight against PH...and we're looking forward to hearing more when Debbie gets back!

Thanksgiving...

2010-11-22T17:08:00.000-08:00

This year, as every year for the past decade, I am thankful for so many of the amazing people - the true heroes of life - that I get to meet in my work at PHA.

Too often, the great meaning and pleasure of this work carries a bittersweet side to it. And that is no different this year.

So, this Thanksgiving season, Im writing about two good friends, recently lost. They never met each other but there were a lot of similarities in who they were...
That's Arlene Gabbert in the picture on the left. I rememember the moment it was taken. It was in August, 2007, at a Walk for PH in Minneapolis. The day was windy and wet and people were slow to leave the park shelter for the walk. Then Arlene, a longtime PH survivor, rolled her wheelchair out and led 200 people into the rain and around the loop. It was a brightness of spirit that lit a gray day. I will never forget it.

I saw Arlene a couple of times after that and was saddened to learn earlier this month that she was in hospice. A few days later, we got the word of her passing. We'll miss you, Arlene.

Around the same time, we also learned that Anabel Sivira had passed.

When she notified her fellow staff members of Anabel's passing, Christine Dickler wrote:

Anabel, a PH patient, was the former president of the Venezuelan PH association, FUNDAVHIP, and had recently moved to Costa Rica, where she hoped to establish a new group in a region with very little support. She hoped to apply for a Lantos Grant this year to support that work. Anabel was a positive, indefatigable energy in the community and her life is an incredible reminder of why our work is so important.

This summer, when we wrote about beginning her work in Costa Rica, Anabell sent this note. I think it speaks to making connections, even if they seem small. I hope that it encourages you…

“Friend, you don’t know the peace that is knowing that I have a friend like you and with [such an] Association of patients. This gives me much confidence and motivates me to continue with my foundation. [You all] are my support. Thank you very much.”

I wish I had a picture of Anabel to include but, for now, this page from the Association she led will have to stand as her tribute.

As we give thanks for the advances we are making, we remember all those who make them possible.

Calling in the chips for awareness...

2010-11-16T14:44:00.000-08:00

Today is PH Awareness Month Blog Day...and I can't think of a better awareness story to blog about than what PHA board member Steve White brought to pass this past week.

Faith Middleton is a Peabody Award winning (twice) broadcast journalist on Connecticut Public Broadcasting Network. Dialing back to May 21, 1968, she was a student at Eastern Connecticut State College, a year ahead of Steve White. For an article she was writing, she convinced the freshman to wear a barrel as part of the Eastern State College Dream Boy contest. The scene was that Steve was disqualified from the contest due to the fish odor in the barrel. Faith got her story...and Steve banked a favor due.

Forty-two years later, Rev. White found the picture of that interview and wrote to Faith - who he hadn't seen since college. He opened the letter with,

"You owe me a big favor and I'm writing to call in the chips."

Well, Faith Middleton paid her debt with style and feeling - and in a big way. Steve spoke about his daughter, Christen, and PH. Dr. Terrence Trow who heads up the PH Center at Yale and Colleen Brunetti, an organizer of PHA's Generation Hope young patient group were interviewed in depth...and the interview has been posted online, where you can click on the player and hear it now.

It's a great interview with a great lesson. Good things can happen when you make the time to ask.

facebook...finally

2010-11-11T08:06:00.000-08:00

Time is always my worst enemy...

There's always too much to do and too little time to get it done.

So, ever since our staff had set up a Facebook account for me a few years ago (during an Awareness Month fundraiser), I have been avoiding it religiously.

Today, I got a note telling me that I had "100 friends awaiting your response".

Being of a generation that gets hives when we let things lie - after a 10 minute tutorial from Debbie - I went to the page and started accepting friends. In reading back messages, I saw the following from Sarah Peek's grandmother, Bonnie Corey

I am Sarah's grandma. I want to write for Pathlight. I always meant to when she was alive and have to now that she has passed. My youngest daughter (Sarah's aunt) is 12. They celebrated their birthdays every year. She did not know how to have a birthday this year. She turned her grief into a BBQ for their birthday where she collected a jar of "Pennies" and collected 588 dollars for PH. I still look up in the sky and sometimes Sarah is there. Hopefully myself, Aunt Emily, and Sarah's grandpa will be able to join Michelle, Dave, and Nathan at this years walk on Long Island. Hope to speak with you soon.

How could I let a note like that go unanswered since September 3?

I'm moved and I'm sold. My next step is to talk to Emma - like Debbie, one of PHA's social networking experts - about how I can keep a Facebook presence putting in 15 minutes a day.

.

Stem cell treatments...

2010-11-08T12:26:00.000-08:00

Sometimes there's science, sometimes there's guesswork, sometimes there's quackery...

Several months ago, in an effort to help patient understanding and navigation of the very new and untested waters of stem cell therapy, PHA’s Scientific Leadership Council produced a statement and fact sheet on this subject.

Recently, we heard from Nick Hill, M.D. who leads the PH Center at Tufts University. He wrote to make us aware of valuable new information for patients produced by the International Society for Stem Cell Research (ISSCR). They offer three wonderful new tools: the Top 10 Things to Know About Stem Cell Treatments, the ISSCR Patient Handbook and How Science Becomes Medicine. We took these items to leadership of PHA's Scientific Leadership Council and have just posted mutual links with ISSCR to make this material available to you.

We hope they are helpful to anyone trying to understand the current state of the stem cell world..

Kicking Off Awareness Month in Style...

2010-11-08T11:59:00.000-08:00

Here’s a guest blog from PHA staffer, Katie Kroner. Awareness Month is an organization-wide event at PHA, but if you have questions about how to get involved, Katie and her team in the Advocacy and Awareness Department are a great place to start…

The PH community has grown and evolved over the years, and so has Awareness Month, but one thing hasn’t changed. Raising PH awareness is about sharing your story. No matter who you are.

Carol Lindstrom knows the importance of PH education. When she was finally diagnosed, it was because her doctor had recently read an article about the disease and referred her for a right heart cath. This week, Carol and her daughter, Cindy Klein, kicked off Awareness Month in style—they advertised their special event and shared information about the symptoms of PH on TV and in two newspapers.
Here’s Carol and Cindy on KMTV Channel 3

As members of the PH community, we’re part of something big. Dr. Michael McGoon says, “You immediately feel, once you have identified other patients with pulmonary hypertension or other physicians that are dealing with it, that you are a member of a common family directed towards a very focused and consensual goal — to cure this thing.”

During Awareness Month, we’re telling the world our goal and asking them to lend a hand in our climb toward a cure. I hope you’ll join us!

P.S. Special events are just one way to raise awareness about PH, so the fact that Phenomenal Hope for a Cure was one of seven fundraisers that took place this past weekend tells you something about our Awareness Month momentum. From the Inaugural Patrick Garcia Memorial 5K in New Mexico, to the 3d Annual Baltimore PH Walk for Hope, to the 10th annual Stanford Race Against PH, we’re raising awareness coast-to-coast. A calendar of upcoming PH events is available at www.PHAssociation.org/Calendar

Charity's back...

2010-10-30T09:33:00.000-07:00

The last time I blogged about Charity Tilleman-Dick was in October 2009, shortly before her double lung transplant. Several years earlier, as a rising young opera singer living with PH, Charity gave a concert to introduce official Wahington to an understanding of PH. Her pianist at the Kennedy Center that special night was then Secretary of State, Condoleezza Rice. The concert generated world headlines.

Late last year, while speaking at the Cleveland Clinic's annual PH Symposium, Drs. Paul Hassoun, Omar Minai and I walked over to the hospital to visit with Charity, who was beginning her long road to recovery. She was in bed but was anxious to speak and her brother voiced the words she was mouthing. We saw her take one of her first brief walks down the hall.

I didn't hear much about Charity for awhile - until late May of this year - when she burst into the press again. Charity, and her spirit and extraordinary voice were back! She was performing at the Cleveland Clinic Patient Experience Summit, and, in the second song of this clip, dedicates Gershwin's, Someone to Watch over Me to the doctors, nurses and hospital staff who had taken care of her.

Then in September, she gave an impromptu concert at the inaugural Colorado PH 5K Walk/Run and, this past Tuesday, opened the TEDMED health conference.

Yes, Charity's back...we're glad of it...and I'm sure we'll be hearing more from her!

Awareness Month is almost here...

2010-10-25T21:17:00.000-07:00

PH Awareness Month is a special time to focus our communities on understanding PH. It begins next week...and a lot is already happening.

Press is starting to build. Diane Ramirez from North Carolina and Vallerie McLaughlin, M.D. from the University of Michigan had a great joint interview with Dr. Radio (Sirius) from both a patient and physician perspective. It's well worth a listen. After the interview, Diane also got word that the New York Times would like to interview her for their Patient Voices series.

If you'd like to get your own free Media Guide, Media Action Alerts and other media resources, they're all waiting for you here.

Every year more Members of Congress and their staff members learn about PH at our Congressional Luncheon. This year it will be on Wednesday. November 17 at noon at the Library of Congress, Members Room, Jefferson Building. If you're in the Washington, DC area, you're welcome to attend. If not, we ask you to call your own Member's office and make a personal invitation. PHA has all the information you need to find your Representative and make an effective connection.

More and more PHA members are involved in creating awareness by inviting their local goverments to issue Awareness Day, Week or Month Proclamantions. Patients Doug Taylor and Leslie Polss are having so much fun with this they've created a video and cartoon showing how it's done. There's even a model proclamation for you to use as a template.

If you're into social networking, there are special programs available for you. Blogging Day is November 16. Find out how you can use your personal story, blog or Facebook page to build Awareness.

November is Awareness Month. It's a great time to put in a little effort to make a big difference. We hope you'll take advantage of one of the many choices and how-tos available to let your community know about pulmonary hypertension. If you do, we all win!

Alfred Fishman, MD: an appreciation

2010-10-11T06:23:00.000-07:00

On Friday morning, as I was getting off a plane in Raleigh-Durham, I received a note from Carol Vreim (via Dr. Steve Kawut) that Dr. Al Fishman had died in Philadelphia at 92 years of age.

It was appropriate that the note came from Dr. Vreim, who in the early 1980's worked with Dr. Fishman and others in developing the NHLBI pulmonary hypertension registry which formed a cornerstone for much of the research over the following two decades. Dr. Fishman argued that registry into existence.

Put simply, Dr. Fishman was one of the early builders of the field of pulmonary hypertension. His work made much of today's progress possible.

Here is what three of his colleagues have written...

The modern era in pulmonary hypertension began with the NIH Registry of Primary Pulmonary Hypertension in the early 1980’s that defined the disease accurately and began to base therapy on scientific study. Many of us in the field and in PHA started our clinical careers through work on this registry.

Al Fishman began his career in the pulmonary circulation in the 1940’s as a fellow with Cournand and Richards, who won the Nobel Prize for their work defining the physiology and diseases of the pulmonary circulation through right heart catheterization. Al Fishman was a major reason for the initiation and success of the NIH registry and for developing this second generation of PH researchers and doctors. We owe him a great debt as we stand on his shoulders and are grateful for his vision.

John H. Newman, MD
Elsa S. Hanigan Professor of Pulmonary Medicine

Vanderbilt University School of Medicine
Chair, PHA Scientific Leadership Council

Al was the grandfather of PH. To me, that says it all. His insight and dedication to the field is why we have been so successful over the past 6 decades in studying the pulmonary circulation, which had to occur before we could even attempt to develop treatments for PH. I will always be indebted to what Al has taught me, that is, how to think and expand our dreams, exploring far beyond the horizon. He truly was a legend in his own time and will remain a great figure in the field of PH.

Robyn Barst, MD

Professor of Medicine Emerita

Columbia University School of Medicine
Past Chair, PHA Scientific Leadership Council

The sadness of this news is buffered by the recognition that he led such a productive and gratifying life, and did it in a way that was inspiring to many, including me. He will certainly be missed. It seemed poignant and meaningful that the news reached many of us as we were at the REVEAL Registry Investigators Meeting in Boston, hopefully carrying on one of the many threads of his career in trying to further understand PAH by means of a national database

Michael McGoon, MD

Professor of Medicine

Mayo Clinic School of Medicine

Past Chair, PHA Scientific Leadership Council

Judy Simpson and her husband Ed who were among PHA's founders added this...

Dr. Fishman was an important person in the early days of UPAPH. [PHA's original name was United Patients Association for Pulmonary Hypertension.]

Dr. Walker Long, with Burroughs Wellcome at the time, told us that if we could get Dr. Fishman involved other physicians interested in pulmonary hypertension would join in. How right he was!

Dr. Fishman was our keynote speaker at the First International Pulmonary Hypertension Conference in Stone Mountain, Georgia, in 1994. As many of you will remember this was the largest gathering to that date of physicians interested in pulmonary hypertension.

Dr. Fishman encouraged PHA and offered helpful suggestions to us along the way. We owe him a great debt of gratitude.

I had the pleasure of spending time with Dr. Fishman at many of the PHA International and American Thoracic Conferences and, like the Simpsons, appreciated his understanding and support of PHA's efforts. When we were a small organization, he gave us encouragement and credibility. As we grew, he continued to share his wisdom and knowledge.

In 2004 in Miami, Dr. Fishman delivered his last plenary session lecture at a PHA International Conference. It was titled One Hundred Years of Pulmonary Hemodynamics. Typical of who he was, he wanted the lecture to provide understanding of progress to patients..and it did.

Thank you, Dr. Fishman, for all you did to make this a vibrant field with growing hope for patients.

Your contributions were immeasurable. Your legacy continues.

___________________________________________________________

Dr. Fishman wrote over 250 papers during his career. I thought you might like to read one written in 2003 and titled, Primary Pulmonary Arterial Hypertension: A Look Back.

For the many who have already asked whether PHA will establish a tribute fund for Dr. Fishman, that is being discussed and we hope to make an announcement shortly.

PHA Mentors send e-mails from the heart...

2010-09-28T06:12:00.000-07:00

Here is a guest blog from Emma Bonanomi. Emma has been working on developing PHA's new targeted programming for newly diagnosed patients, young adults, patients with associated diseases, family members of adult patients and family members of children with PH. The newest step is PHA's mentor program. Here's what she writes about it...

Some say letter writing is a lost art. Tell that to the patients, parents and spousal caregivers who recently signed up to spend hours at their computers each week, emailing carefully crafted hope and encouragement to people living with PH. With precisely 26 mentors poised and ready to write, there are as many pen pals on the PHA Mentor team as there are letters of the alphabet. This is an apt coincidence for a group of people who make such powerful use of words.

From Anna in Colorado, living with PH, scleroderma and lupus; to Bill in Boston, with a teenage daughter who was diagnosed with PH in kindergarten; to Colleen in New York, diagnosed with PH in 1975 and eager to answer questions about her experiences with supplementary oxygen, there’s no doubt that the PHA Mentors represent a broad range (if not the A to Z!) of backgrounds and experiences.

Yet like so many members of our growing community, each mentor has a deep commitment to helping other PH patients and caregivers that makes them more alike than different, despite their various ages, associated diseases and hometowns around the globe. This is a set of knowledgeable and caring individuals who value the solace of thoughtful language and shared experience. They are prepared to do what it takes to share their hope and courage with members of the PH community who are looking for help finding information or for a virtual shoulder to lean on.

Take Joni, a loving husband and father in Jerusalem whose wife was diagnosed with PH in 1998. On top of his commitments as a caregiver and as chairperson of PHA Israel, Joni was so dedicated to helping other PH caregivers that he stayed up until 3 a.m. Israel time to participate in a mentor webinar training. And take Liz, a PH patient from North Carolina who drove 30 miles to the nearest McDonald’s for Internet access to prepare for the Mentor Program while she was receiving treatment in Minnesota.

Why do these volunteers make such sacrifices to do what they’re doing? Joni says, “I love to help other caregivers … and hopefully help them appreciate the positive aspects of their situation." Liz says, “I am happy, positive and motivated to do all I can to help others deal with our disease." To these PHA Mentors, who provide support through words, sentences and paragraphs, hope is more than a motto. It’s the air they breathe and the driving force that keeps them striving to reach more people affected by PH.

Having exchanged quite a few emails with these mentors as we prepared to launch this program, I can let you in on a little secret: their brand of hope is contagious. But you don’t have to take my word for it. Email a PHA Mentor and find out for yourself.

Visit www.PHAssociation.org/Mentors to email a patient, parent or caregiver mentor. (Mentors are available for case-by-case questions or for email relationships up to three months in length. Free PHA website sign-in is required to view mentor profiles.)

A rare convergance of meetings...

2010-09-27T16:18:00.000-07:00

When I was a kid, I was fascinated by rare convergences of planets.

Maybe that's why last week was so special (maybe there were other reasons, too).

On Thursday, PHA's Corporate Committee met, focusing on the major agenda item of how industry can help PHA build greater awareness of PH among the American public.

This was followed on Friday by PHA's Scientific Leadership Council meeting. Providing guidance and direction for PHA's complex array of scientific and medical programming and interest, this leadership group's agenda is always dynamic and wide-ranging. Last week's meeting took us through discussions and decisions on everything from expansion of PHA's research program, analysis of an investigator training program, new developments related to our medical journal, and consideration of a new prostacyclin document...to the pros and cons of defining expert PH centers, recommendations to Social Security on how they handle PH disability issues, discussion of next steps for PHA's Medical Education Fund programs and the rapid evolution of our pediatric programming. As always, it was a busy and fruitful day.

But that wasn't the end of the week. On Saturday we had much more in Towson, Maryland. With their new Chair, Louise Durst RN, PHA's PH Resource Network Executive Committee met to plan their next steps. This group within PHA, now composed of over 900 nurses, pharmacists, respiratory therapists and other allied health professionals has been growing rapidly. their leaders discussed their 2011 Symposium, changes in their strategic plan and support of various PHA patient and medical programs.

Simultaneously in the same hotel, PHA's Baltimore/Washington area regional "On the Road" patient Conference took place. Almost 250 attended a full day of programming that included sessions on current treatments, diagnosis, impact on family and relationships, eating better, traveling with PH, exercise and yoga and a whole lot more. All the committee planners (led by Charles Burger, M.D. of Mayo-Jacksonville) and speakers were volunteers, including many nationally and internationally known physicians.

Well, I wish I had time to write about the great people I met and the stories I saw and heard but there's not much time to put our feet up. Our next regional "On the Road" Conference is next Saturday in Dallas and I'll be preceding that with a Thursday 30 City Medical Education program led by Gregory Elliott, MD in Provo, Utah. More on that next week!

Back & forth...& worth it

2010-09-23T14:42:00.000-07:00

Sometimes, it's worth the jet lag...

I just got back from a four day trip to Barcelona, Spain...well, maybe a little less with the time in the air. The itinerary included a presentation to the leaders of PHA Europe, work on a global survey of PH patient and caregiver depression and anxiety issues, getting to know a new company in the field and attendance at the European Respiratory Society Conference.

The PHA Europe Annual General Assembly was a thrill for me to attend. I remember just a few years ago that this confederation was just an idea. Now- in Castelldefels, a beautiful beach suburb of Barcelona - it is clear how far that idea has come. Representatives from PH associations in Austria, Belgium, Bulgaria, the Czech Republic, France, Germany, Greece, Hungary, Ireland, Israel, Italy, the Netherlands, Norway, Poland, Portugal, Slovakia, Spain, Sweden, Turkey and Switzerland were meeting to discuss ways they can better work together and help each other grow.

Many of the leaders, including PHA Europe's president, Gerry Fischer (Austria), and Vice-President, Pisana Ferrari (Italy) and Melanie Gallant-Dewarin (France) are old friends who have attended PHA Conferences and who we've worked with on many projects.

I was honored to be invited to give a presentation about PHA in the U.S. As I spoke and heard the questions during and after, it was clear that, while we may speak different languiages and live in different places our cause is the same...and that the cooperative spirit and common purpose that has made progress possible and rapid in the U.S. is the backbone of growth in Europe, as well.

We look forward to our continuing and growing partnership.

Out of hope...joy

2010-09-14T05:09:00.000-07:00

I couldn't resist one more posting on Lil Long's swim. Yesterday, PHA board member Steve White who represented us at Lil's crossing sent his story on what took place and its meaning. It's wonderfully told and well worth sharing. Also, last night Lil sent a video (which you can see below) made by her friends Nancy and Lisa. It's tells the adventure of the Mt. Moriah Choir in getting to the victory celebration. They surely do know how to party in the Delta!

Dear All,

I had a great trip down south for Lil Battle Long's swim across the Mississippi River to honor her dear friend Nicky Roberts who lost her struggle with PH just three years ago.

Friday I flew from Albany, NY to Memphis and from there drove to Cleveland, Mississippi though fields white with cotton to meet up with Doug Miller, producer for the film crew, and Gareth Gwyn from Actelion. We then headed over to Lil's home in Duncan and enjoyed a great meal in one of the most interesting homes I've ever been in. It was creatively remodeled by Lil and her husband Henry Earl Long. It's almost impossible to describe what they've done with this house. Suffice it to say that the kitchen, which is like something you'd see on the Food Channel, has bright red cabinets and counter-tops made from rare African zebra-wood, and a guest bedroom has a ceiling covered with antique doors that Henry Earl got from an architectural salvage yard. The main thing about their home, though, is its warmth and openness to guests. When you spend a little time with Lil and her wonderful family you get a glimpse into how incredible her support system is and how loving and courageous they all are in facing Lil's PH. But we made it an early evening since Lil wanted to get to bed and get rested up for the next day.

In the morning, all wearing red T-shirts with "Go, Lil, Go!" printed on the front (courtesy of our friends at Actelion) we met up with the film crew and Henry Earl's step-son Justin to make our way over to a boat-launch on the river. We drove up and over a levee and down the other side to the shore of a lake that is parallel to the Mississippi River. There we met up with Lil, Henry Earl, Lil's son Battle, a newswoman from a local TV station, and a friend of Lil's who is a respiratory therapist. Justin and Henry Earl's boats were put into the lake and we headed south to a cut that gave on to the mighty river itself. Where we were is a very remote and wild area teeming with birds of all kinds (egrets, wild turkey, gulls, etc.). As we went through the cut connecting the lake and the river, enormous carp, which were disturbed by the sound of the boat motors, leapt out of the water to a height of two or three feet. Some of the fish were 10 to 15 pounders, according to Justin who grew up on the river and was a superb tour guide.

After checking out a few possible launching sites, we tied up the boats at a sandy stretch and Lil began to prepare for the swim. She was interviewed by Doug for the film first, and then she asked for some private time with me to pray and take communion and have a blessing while the others waited a dozen yards away (we Episcopalians stick together!). Finally Lil put on an inflatable floatation device, flippers, webbed gloves, and a snorkel. She also had an audio player with some Celtic music that had been some of Nicky's favorite music. She was ready to go, but she had to wait for a tug pushing about 8 or 10 barges loaded with rocks to pass by. After collecting her thoughts for a few minutes, she gently eased into the river and headed for the Arkansas side which was about a quarter of a mile away, straight across.

The two boats stayed near Lil the whole way over. At one point Lil rolled over on her back and began laughing. She told us later that she had felt something slimy -- probably a huge catfish or some other denizen -- slide along her leg and this made her laugh. Lil had predicted that the swim would take about an hour. But 27 minutes after pushing off from the Mississippi shore, she was on the Arkansas side feeling tired but triumphant. She rested in the water for about 5 or 10 minutes before getting into the boat. She said she was amazed she had done it and now knew she could do anything and that PH would not stop her. She said she felt Nicky with her all the way, as well as the presence of God, and my daughter Christen, and Doug's mother (who also died of PH seven years ago). It was a powerfully emotional moment for all of us who were there with most of us shedding a tear or two.

On the way back to the boat launch we estimated that, given the current that carried her down the river, she swam a total of about half a mile. Pretty good time for someone with PH! As we came out of the cut and into the lake, a giant carp leapt out of the water and smacked Gareth on the left shoulder hard. Justin estimated it was about a 10-pounder and we were going maybe 30 miles an hour. The fish left a slimy, smelly impression on the left sleeve of Gareth's T-shirt that I thought looked rather like Homer Simpson. We all advised Gareth that he might want to change his shirt before going to the airport.

This was followed by a party with the best fried catfish I've ever had, a wonderful church choir of young people from Jackson, MS, a local flamboyant antique blues singer who worked the crowd, and lots of Lil's family and friends. It was a very happy occasion and there was much pride in Lil's accomplishment. Lil glowed and, with a glass of champagne in one hand, gave a hug around the neck to one and all and accepted everyone’s congratulations.

What a day of honoring Nicky and all who have, and continue to struggle with PH! Lil’s swim was an act of courage and determination that shows the value of exercise for PH patients as well as the bonds of love and hope that unite everyone in the PH community. I'm confident that Lil's story in what I'm sure will be a superb film will be inspiring to many people who fight this wicked disease for along time to come.

I am full of gratitude for the opportunity to be a small part of this incredible event.

Steve White

...and as a bonus, here is the Mt. Moriah Choir performing at the celebration!

On the ramp to Awareness Month, part 2...

2010-09-11T09:34:00.000-07:00

Awareness Month in November may seem like it's a long way off...but, here at PHA, the preparations have been long underway.

This year's theme will be Climbing Toward a Cure...in recognition of the focus brought to PH awareness by Drs.Benza and Frantz and Jessica Lazar, P.A.'s Kilimanjaro climb and the related Unity walks in communities throughout the U.S.

On Firday, PHA's 2010 Awareness Month page launched. I hope you'll visit and consider ways you can help us all Climb to the Cure.

In the meantime, I hope you'll take a look at the video we presented just before the climbers took the stage on June 25 to tell their story - and ours - at PHA's International Conference.

On the ramp to Awareness Month, part 1...

2010-09-11T09:13:00.000-07:00

It's been an exciting Saturday morning...

While I've been at my desk preparing for upcoming meetings in Europe and the U.S., I've also been tracking PH patient Lil Long's heroic swim across the Mississippi in memory of her late friend, Nicky Roberts who lost her own struggle against PH in 2007 (See August 27 and May 31 blogs).

All morning PHA Board Member, Steve White and Actelion's Gareth Gwyn and I have been texting back and forth. Steve is representing PHA at Lil's swim and Gareth's company has loaned us a film crew to document Lil's amazing feat.

At 10:36am, Gareth e-mailed me the picture on the left. That's Lil coming out of the Mississippi River after a successful swim and months of preparation and building PH awareness in her region of the country.

This comes 10 days after PH patient Christie Breault's appearance on the Today show.

As we move toward November and Awareness Month, the question is, "What's next?"

All I know is that whatever the answer, the certain thing is that awareness is the essential first sep toward solutiions and PH is no longer living in a dark corner. Lil, Christie and all who are building awareness, thank you for bringing the power of one - your own efforts - in partnership with and to the benefit of many.

If you're moved to be a part of building PH awareness, Awareness Month is coming!

Making Noise About PH

2010-08-30T10:25:00.000-07:00

I speak and write a lot about the power of community. It's what makes advances in so many directions possible in the fight against PH.

On Friday, Margaret Beardsworth, who works on insurance issues here at PHA came in with some great news. A partnership of patients, family members and medical professionals that began 3 years ago has been making steady advances in working with the Social Security Administration (SSA) to understand the special issues of PH patients, especially as it relates to diability issues. Friday's victory comes out of the work of a team of physicians that has been working with the Institute of Medicine under contract to SSA. The impact is expected to be very large for PH patients.

Here's what Margaret wrote today in her guest blog...

“YAHOO!!!!!” That was Alan Harder’s response Friday when PHA received an official report from the Institute of Medicine (IOM) committee that outlines a set of recommendations for the Social Security Administration (SSA) to use in updating their Cardiovascular (CV) Listing of Impairments.

Alan is a former SSA employee and PH caregiver. Like many others in the PH community, Alan has been working for three years to guide the SSA in the process of updating the PH-related language in their Listing of Impairments - the list of disease states that adjudicators use to determine if an applicant qualifies for Social Security Disability (SSD).

Friday’s report is a detailed set of recommendations that touches on the broad spectrum of cardiovascular disease states. It contains an entire section dedicated to PH, with language mirroring, almost word for word, the recommendations that PHA provided the IOM. You can learn more about the recommendation process from one of Rino’s past blog entries.

If 328 page report is a little heavy, you can read the report introduction instead - a 4 page PDF that gives an overview of the IOM’s work and mentions pulmonary hypertension twice.

What does this mean? We are one step closer to streamlining the SSD application process for PH patients by updating the language used to determine if a PH applicant is disabled. The Social Security Administration is still a long way from releasing completely updated cardiovascular listings, but the PH community is heading in the right direction!

A big reason PH is receiving so much attention in this process is because of the united efforts between the Scientific Leadership Council’s physicians, PH community members and activists and the government. A special thank you to all who have volunteered their time and expertise on this initiative, including Drs. Ronald Oudiz (Harbor UCLA), Robyn Barst (Columbia University emeriti), Harrison Farber (Boston U.), Vallerie McLaughlin (U. of Michigan), Gregory Elliot (University of Utah), Adaani Frost (Baylor), Michael McGoon (Mayo), Nickolas Hill (Tufts), Erika Rosenzweig (Columbia), Charles Burger (Mayo) as well as Carol Vreim, Alan Harder, Gavin Lindberg, and Jennifer Jaff.

Making noise about a rare disease like PH can be challenging, but we’ll continue to push forward, one step at a time, each time making a bigger difference.

Swimming the mighty Mississippi River...

2010-08-27T19:31:00.000-07:00

All of us at PHA have been following PH patient Lil Long's preparations to swim the Mississippi River in memory of her friend Nicky Roberts and to build PH awareness. The story is compelling.

Today, we got great news from Actelion that they will provide PHA with a film crew to cover the September 11 event, presenting the magnitude of the achievement and help us also use it as a platform to create a video that will offer a platform to talk about PH and exercise. The film crew will be Glenn and Glenn Productions, the folks who did such a great job procucing our 2010 Conference Video.

Jess McKearin, who leads our special Events team, sent me a passage from Lil's journal in which she talks about her recent test swim. I think it's well worth reading.

It broke my goggles; it tore my snorkel away from my mouth. My nose clip nearly drowned me because I couldn’t get enough air. In other words everything I thought had prepared me for over a year was useless. My heart was pounding I guess as hard a heart can pound. I swam in circles for fifteen minutes from being so disoriented I didn’t know up from down. That current is a powerful force to be reckoned with.

When I finally figured out what all I was doing wrong, I grabbed the boat (I was swimming with no life jacket or tether) and had to rethink everything I had learned.

First of all, you CANNOT keep your head under water and swim the river, thus the disorientation. Second, you have to spend money on a very good pair of goggles. You cannot do completely without them because my left eye where my goggles broke is almost swollen shut with sand! Third, keep your eyes on the prize, the other side! Fourth, if you ever get a little over halfway across, the current starts to help you instead of hinder you. It will begin to push toward the other side. And, most of all, fifth, stay calm! It’s hard to breathe when your heart in beating 90 miles an hour!

When I figured all of this out, I finally started getting somewhere. If I hadn’t spent that time going in circles, I probably could have made it three fourths across a very swollen river.

Next time I’ll be calmer. It didn’t help any that right before I went in the water the Cap’m and a media guest saw a four foot alligator gar! I really did NOT want to hear that.

When I got to the middle, I paused to look around. I absolutely could not believe that I was in the middle of that great river of ours. It gave me hope and I felt Nicky all around me. I was completely awestruck.

To see Lil speak about her test swim, click here.

She's been building a lot of awareness through TV (the clip below talks about a swim date earlier than what is now a September 11 planned date)...

New name, same great program...

2010-08-27T15:52:00.000-07:00

A number of years ago, I heard a story that instantly helped me understand the importance of PHA's Patient to Patient Helpline.

One night, a young woman called 800-748-7274. She was with her father in the parking lot of her doctor's office. They had just left the doctor's office where she had been given a diagnosis: pulmonary hypertension. The doctor told her she had a year to live and gave her a PHA brochure. Devastated, she called the Helpline number listed there.

The volunteer who picked up the phone was Dorothy Olson. After listening to the young woman's story, Dorothy said,
It's not over. I have been living with this disease for over 25 years.

...and everything changed.

Today, Debbie Castro, PHA's Director of Volunteer Services, asked our staff to start circulating some important news.

Here it is...

PHA’s Patient-to-Patient Support Line is a new name for one of our very first patient services. Formerly known as the “Helpline,” we’ve renamed it to highlight one of the biggest benefits of this service: immediate connection with another patient. Our Support Line volunteers also provide information, like the contact point of a nearby PH clinician or support group, but we really want patients and caregivers to know that a PHriend is always a phone call away.

800-748-7274

Need to talk to another patient about anything and there’s no support group nearby or the next meeting is several weeks away? Are you a caregiver that needs information and support? No internet access to our Discussion Boards or online chats? No problem—you can always dial our Support Line to talk to another patient right away.

Spirit that drives us forward...

2010-08-27T14:28:00.000-07:00

I write a lot about the patients and family members and medical professionals who drive our common cause forward. Today, I'd like to write a few words about our PHA staff...

Early on, our hiring values evolved to include commitment to cause, a demonstrated ability to work in teams and folks who are as bright as we can find them. One of the things I've always appreciated about our staff is their ability and willingness to collapse around a problem and solve it.

Recently, two staff at the supervisory level and one program associate left PHA for personal circumstances that gave us shorter than usual time to prepare. Unfortunately, all three were in the same work area, so it put a lot of pressure on our remaining medical services team.

Not only have various staff been jumping in to fill the gaps but they have been doing so with gusto!

In a great show of spirit, they printed up badges in the picture you see, carrying the message

Medical Services

Special Forces

The Few - The Proud

So, helping Rachel Wheat and Meghan Finney, are Doreen Lucadamo, Amanda Butts, Meghan Tammaro, Suzanne Flood, Carsten Hailey, Patti Lalley, Patty Hunt, Patty Scuderi and Jessica Ritter As the badge says, they and their peers are the Few and the Proud! And we're proud of them and all the good folks here who are doing so much to change the history of this disease.

Many thanks.

Life has many paths...

2010-08-26T17:03:00.000-07:00

Roham Zamanian is a bright and energetic young physician who I've known for the past several years. When Dr. Ramona Doyle left the Vera Moulton Wall PH Center at Stanford University, Dr. Zamanian was the natural choice to lead the Center's Adult Pulmonary Hypertension Clinical Service.

Today, I got to know Roham in a different way...through his extraordinary life's journey

From our PH community, I have learned that heroes are defined by the way they handle what life puts in front of them. Roham's quiet and clear sharing of his important story is heroic in my view.

When I asked his permission to share it with you, he wrote back:

I feel that I have arrived at a moment of clarity in my life – that I have found the purpose – and working in the PAH community is just what I was meant for. I’ll be honored for you to share my story.

93 medical education meetings..and more

2010-08-16T07:08:00.000-07:00

In early August, I traveled to Cheyenne, Wyoming.

Dr. Dave Badesch, a Professor of Medicine at the University of Colorado was presenting a PHA medical education session for physicians and allied health professionals. A leader in the field, Dr. Badesch is also in charge of the highly regarded PH Center at the U. of Colorado and has been a past Chair of PHA's Scientific Leadership Council. He is one of the early group of physicians who began building PH research and clinical practice more than two decades ago.

The program Dr. Badesch was delivering is one of 30 being presented this year by expert PH physicians in smaller cities throughout the U.S. Chaired by Darren Taichman, M.D., Ph.D. from the University of Pennsylvania, the 30-City program is connecting expert physicians with less experienced PH physicians in ways that will provide increased knowledge, earlier diagnosis and better treatment for PH patients.

It is one of three PHA initiated face-to-face medical education programs - PHA's Preceptorship and On-Demand programs being the other two - that will this year provide medical education in pulmonary arterial hypertension through over 90 sessions (up from 40 last year and 6 per year between 2005 and 2007). That's 90 education sessions in a disease state with between 20,000 and 30,000 diagnosed patients.

Such intensive medical education in a relatively small field is possible for several reasons. First, PHA is blessed to have two active and engaged medical sections, one with 500 physicians, the other with 850 nurses and other allied healt professionals. Through the interest and commitment of these medical leaders, PHA has a pool of expert educators willing to step forward and further develop this important new field of medicine. Second, our industry sponsors - Actelion and Gilead at the Platinum level and United Therapeutics and Pfizer at the Silver level - understand that co-sponsored medical education brings greater credibility to the content, with a greater sense of ownership and engagement by the participating medical educators.

We believe this model of delivering medical education provides a win-win for everyone...most importantly the patients who are living with pulmonary hypertension.

A strange world...

2010-08-03T18:00:00.000-07:00

In 2001, Alicia Mundy wrote Dispensing with the Truth. It is the story of the battle over fen-phen, the drug combination that was ultimately withdrawn from the market because some patients who were taking it developed heart and lung damage, most notably pulmonary hypertension.

Many of PHA's members and some of our board members became PH patients after taking fen-phen. Indeed, Alicia Mundy's book opens with the story of Mary Linnen, the daughter of former PHA board member Tom Linnen and his wife, Mary Jo. As the liner notes describe Mary, she was "a healthy young woman...who took the drugs for only twenty-three days to lose weight before her wedding, and then died in the arms of her fiance a few months later".

I've been thinking a lot recently of Mary and Tom and Mary Jo and others like Candi who lost their health or their lives or family members to PH developed through fen-phen (Pondamin and Redux).

On July 13, the New York Times reported under the headline F.D.A. Review of Diet Pill Relieves Investors that the drug Qnexa had received a positive staff review of it's safety and effectiveness. The maker's shares immediately soared 15% while two competing drugs soon due for FDA review went up 9% and 21 %.

I understand that weight loss is the holy grail of American life but I - and all of us who are part of the PH community - have seen the collateral damage. Qnexa contains the amphetamine phentermine -- one half the ingredients of the fen-phen combination. The makers would say, it's the safe half.

Maybe.

On June 15, the New York Times carried a second report that the FDA panel of expert advisors reviewing the drug on June 14 had voted 10 to 6 to recommend against approval of the drug based on safety concerns.

Now the FDA has a choice. We'll see what they do.

Carol Vreim...

2010-07-29T07:57:00.000-07:00

Today is Carol Vreim's last day at PHA...

She certainly been been a tremendous asset to PHA as a part-time employee for the past several years but her life and work have been intertwined with the PH community since the 1970's.

In 1973, a group of physicians with an early interest in PH met under the auspices of the World Health Organization. Their goal was to review the current state of knowledge on Primary PH (later described as idiopathic PH) and proposed the establishment of a multicenter collaborative study. This led to the historic and invaluable NHLBI PPH registry which enrolled 187 U.S. patients from 1981 to 1985. Carol was in charge of that registry. It was this information that framed much of the research that took place over the next two decades. It also helped to develop a network of physicians who built this little known field into today's vibrant and active medical community.

Carol also was a catch point for patients during a period of great isolation. They would call her desk at the National Heart Lung and Blood Institute and she would put them in touch with each other and, as PHA came into existence, with PHA leaders. As a trustee of the Dauna Leigh Bauer Foundation, she kept Dauna's legacy alive, through early Foundation gifts that helped PHA establish itself in the early days.

After Dr. Vreim's retirement as Deputy Director of the Lung Division at NHLBI, we were honored to have her talents at PHA.

Thank tyou Dr. Vreim. Good luck in your move to Pennsylvania. Have no doubt that we'll miss you and that we'll stay in touch!

A striking point...

2010-07-08T07:01:00.000-07:00

On June 29, the following appeared in an article titled FDA Weighs Rare Disease Drug Regulation But Agency Nixes New Division in the publication, FDA Week.

“Experts suggest that there are roughly 200 FDA-approved treatments for the nearly 7,000 rare diseases that exist globally. So while there have been many successes, the unmet needs are huge,"

I read these words and read them again.

Why were they so striking to me? Do the math and consider this...

With 8 treatments for PH, 4% of the approved treatments for the 7,000 rare diseases are for PH.

While PH is a rare disease, our patients' and families' focus on putting a spotlight on this disease has brought it out of the dark corners and into the attention of our dedicated researchers and clinicians and the pharmaceutical companies considering new treatments to pursue.

We are not yet where we need to be...at this point there is not a cure. However, these numbers are the result of hard work toweards a clear target. They.are one indicator that we are moving forward rapidly thanks to the dedication of our community of hope.

Conference bits – Heroes: Wendy and Bill Bockhorst

2010-07-02T11:19:00.000-07:00

One of the greatest parts of the Conference experience for me is the connections and reconnections.

Bill and Wendy Bockhorst are among the heroes I have seen at past Conferences. I knew that I would not see Wendy this time. She passed last year. I did see Bill though and it reminded me what great people they are.

Together, they had for years organized golf tournaments and casino nights in Arizona and Wendy had been a support group leader.

Seeing Bill reminded me of Wendy’s courage and her words.

“One main reason that I get involved through special events is because my PH is genetic…if I can continue working to raise funds for and awareness of this disease, then maybe the next generation won’t have to suffer as much."

It is because of people like Wendy that the dedication on the video we create at Conference is unchanging. That video – and, indeed, the Conference – is dedicated to

“…the memory of those who have gone before, to the spirit of those who fight back today and to those yet to come.”

Wendy is on the left in the picture above.

Conference bits: on a personal note

2010-07-02T10:22:00.000-07:00

Our PHA staff prepares detailed outlines for each of our plenary sessions. With so much going on, it’s important that our meal and other programming not run over and keep registrants from other activities. I receive and approve those timelines.

At our Friday night dinner, something seemed wrong.

I saw Amanda escorting Pat Paton, one of our founders, to the stage. Staff was also putting a chair on the stage next to the podium. This was not in the script.

The next thing I knew, Pat Paton was inviting me to the stage to sit in the chair. Her presentation was about my 10 years at PHA. While that was quite a surprise, a bigger surprise came a moment later. Pat spoke about my wife, Laura, not being able to attend past Conferences but now she was in the room. I started looking around for a speakerphone. Instead, I saw Laura starting to come up the stairs to the stage. She really was in the room!

Following Pat’s talk, her sister and PHA co-founder, Judy Simpson presented me with a very special plaque. I say special because it includes the names of all the board members I have served with during the past decade.

It was a wonderful surprise and one for which I will always be grateful.

Conference bits - A radio marathon

2010-07-01T15:30:00.000-07:00

Before I came to Conference for the first time in 2000, I spoke with our board chair, Bonnie Dukart, about using the event to generate press and build awareness of PH. She told me there had been board concerns about such public visibility. At the time there was fear of losing jobs.

That has changed over the years, with our community understanding and embracing media awareness as a tool to put a spotlight on this disease and build momentum for change.

This year, we focused a considerable part of our press efforts on the fact that PHA, the organization representing a disease with only 20,000 to 30,000 diagnosed patients, gives an annual award to a physician carrying a prize of $50,000 for continuing clinical excellence at the physician’s PH center.

The approach worked – bigtime!

The day before we left for Conference, this year’s winner, Dr. Vallerie McLaughlin and I started off with an hour long PBS radio interview that turned out to be just a warm-up.

Last Thursday at 3:30am Pacific Time, Dr. McLaughlin and I made our way down from our rooms to a meeting space where we did 15 more radio interviews – each 10 to 15 minutes long – over the course of the next four hours. The interviews brought us into East Coast drive time and covered markets ranging from New York City to Oklahoma City, from Detroit to Colorado Springs. First reports were that we brought the PH message to 2.5 million listeners…and replays are expected to add up to 4 million more.

How can we fail when we have members of our community willing to work day and night – in this case, literally – to make a difference?

After the interviews, Val and I made our way to other meetings, including our PHA board meeting and International Leaders Summit that started soon after.

Conference bits – the Fashion Show

2010-07-01T12:32:00.000-07:00

I never thought I could enjoy a fashion show…but, at Conference. I surely did.

Rynna Ollivier has been producing these at PHA Conferences since 2002. Her own experience as a model and a fashion show producer certainly showed. However, it was her experience as a patient that made this something so very special.

I knew that many who have come to Conference over the years saw this event as a real highlight but I had always been too tied up with conference details to attend.

No excuses this year. The Fashion Show had been built into the Saturday night dinner. As Rynna said in giving the history of the show, “it started in a little room that was overfilled with patients anxious to see how others lived and dressed with the pump and oxygen. It grew every time and tonight for the first time, it’s a big part of the big show. Our patient models are here in front of all 1,250 of you.”

It was great to see over 20 models, little ones and adults, walk the runway, while Rynna spoke about fashion, pumps, oxygen and connected all this to the lives of patients, families and medical professionals. Indeed, the medical professionals were a very special part of the final segment of the show. The crowd went wild when Dr’s Mike McGoon of the Mayo Clinic, Fernando Torres of University of Texas Southwestern, Ron Oudiz of Harbor UCLA and Dunbar Ivy of University of Colorado Children’s Hospital came onstage and escorted their patients on the runway.

It was a special moment at a very special event.

Enjoy the Fashion Show slide show at the top right of this blog page (click on View All Images). I'll leave it up for a couple of weeks.

Taylor and Sarah...

2010-06-22T07:53:00.000-07:00

Taylor and Sarah. Two little girls on different coasts..

On June 5, 2010 the Caffrey family hosted The Race 2 Cure PH - The Taylor Caffrey Memorial 5K Run/Walk in Anaheim Hills. Nearly 600 runners and walkers registered and many more came to show their support..

Shari and Michael had lost Taylor on September 19, 2009 at the age of 4 1/2 She had been diagnosed with PH in 2008.

Taylor - known to her team as as Coach Tay - was undoubtedly the youngest coach in the history of the Canyon Hills Soccer Association, where she participated with her sister, Brooke.

The family has created a website, TaylorsWish.org /, to keep her spirit and inspiration alive.

Yesterday, Michelle Peek called. I hadn't seen her since I met her and her husband David and their children Sarah and Sarah's little brother, Nathan last October at the New York Walk for PH on Long Island. I had blogged about Sarah and her family shortly after the event.

Michelle had a question to ask but when she eased into it slowly, I knew there was news.

Did you hear about Sarah?

I hadn't. She told me that Sarah had passed on March 3 at age 7. Another great sadness. Another reminder that as fast as things are moving, they still don't move fast enough.

Syracuse Online reported on Sarah. Thie story included Sarah's dream to ride a bike.

At Christmas, her grandparents bought her a three-wheeled bike. In a photo taken Christmas Eve, she’s standing on the pedals, smiling broadly. The straps from her backpack can be seen over her yellow Christmas pajamas.

Michelle told me she is working with their family's church which is organizing an August awareness event in Sarah's memory. PHA will help with that in whatever ways we are asked.

Our condolences to the Caffrey and Peek families and to all who, despite terrible loss to this disease, continue to help others. We share your sadness. We are in awe of your strength and your humanity.

The Run-Up to Conference...

2010-06-14T08:15:00.000-07:00

Last week we began the final run-up to Conference And run it is...

Wednesday started us off on a frantic series of activities. Online registration was scheduled to end (we gave it an extra day) and Doreen led our next to last Conference staff meeting with lots of details and marching orders. On Thursday, the 10 committee chairs that make up PHA's Conference Committee held their last pre-Conference call. On Friday, staff packed up everything we're shipping to Conference. On Saturday, over a dozen staff were in for various projects, most importantly putting together the idividualized Conference packets that each registrant will get. Also, on Saturday, the Conference program books went on the printing presses and the ScientificSessions book began final review.

The end of online registration is also a marker point for how we're doing with registrations.

I'd say we're doing pretty darm good for this kind or economy...or any kind of economy.

At close of online registration in 2008 (also two weeks out), we had 1,015 registrants. This year, we had 1,108 - 93 better. And, registrations continue to come in briskly by phone and fax.

Congratulations to everyone involved. It's a great testament to the value of this meeting - and a lot of hard work!

7 Years in a Row...

2010-06-07T16:58:00.000-07:00

While blogging a couple of days ago about the check PHA received from the law firms involved in the nifedipine lawsuit, I started thinking about some of the things they must have seen as they made their giving decision.

For the past seven years, there has been a little box at the bottom of PHA's web pages showing a 4-Star rating from Charity Navigator, the internet's largest and most highly regarded evaluator of non-profit performance. Their most recent evaluation came in May. Clicking on that box brings you to a lot more information about that rating and what it means.

In the same place, we also carry our Better Business Bureau Accredited Charity designation, showing that PHA meets all 20 of that evaluating organization's standards.

It's good to know that evaluations like these draw attention and interest...and apparently can have quite an impact.

Quite a surprise...

2010-06-05T09:33:00.000-07:00

"What do you know about this?"

Those were the first words I heard when I got back into the office on Monday afternoon following an outside meeting. Our Senior V.P., Adrienne Dern and Finance Director, Patty Scuderi handed me a letter. Looking at the letterhead, I saw it was from an attorney's office...leading to an immediate "uh-oh" in my head.

As I read, I saw that we had been selected to receive residual funds by three law firms involved in a class action settlement regarding price fixing on the calcium channel blocker, nifedipine. Before I finished reading, Adrienne and Patty handed me the check...$576,246.64! My uh-oh turned to amazement.

While we were aware of the drug (it's described in the calcium channel blocker section of PHA's Patient Survival Guide), we had no idea of any lawsuit or that we were being considered to receive residual funds. This was truly an astonishing moment.

The next day, the Chair of our Development Committee, Dr. Mike McGoon, put in calls to attorneys at each of the involved lawfirms to help us better understand how this had happened and to invite a representative of the firms to attend Conference to see what their decision is helping to buiild.

Mike reported back that the attorneys had researched PHA and determined that we were a well managed organization doing important work that could put the funds to good use.

To receive this sort of recognition and support from people we have never met goes far beyond the surprised happy face at the top of this blog. It is really quite gratifying.

A blog of a different color...

2010-06-04T12:34:00.000-07:00

Usually, I write about what's happening at PHA. Today's a little different. It's about context.

When I graduated from college many years ago, I went into VISTA - what was then described as the domestic Peace Corps. Having grown up in the Bronx, moving to very rural St. Mary's County, Maryland was a real change. The project was grass roots, founded by local people who had led civil rights activities in the county in the 1960's. It was still a turbulent time with several VISTAs being burned out of their homes. However, I met many wonderful people and, after my year of service, went back to New York.

Eighteen months later, I was surprised to be invited to return as the VISTA supervisor. I accepted.

So, at the age of 25, I found myself supervising 19 young people who wanted to make a difference.

One of the issues that struck me as important then was finding a pathway for our staff once they finished their year of service. How could those who wanted to turn their experience into a career.

At that time, I started reading about a Catholic priest who had come from the coal fields of Pennsylvania to the inner city of Washington, DC, where he had walked the streets with other civil rights leaders during the DC riots. Geno Baroni went on to found the National Center for Urban Ethnic Affairs and that's where I began to refer our VISTA Vilunteers and where I met Geno and his operations director, Jerry Ernst.

Geno and Jerry and others were building a netowrk of neighborhood and ethnic organizations focused on values and sense of place. Like many great men and women, Geno had one great speech, one great message. His was built around the idea that neighborhoods are the building blocks of cities and families are the building blocks of neighborhoods." As the son of an immigrant, born one year off the boat myself, Geno's message resonated deeply with me.

Recently, my friend Carmella, invited several of Geno's "alumni" for dinner. It was a great night. The best part was her sharing of a video that none of us knew existed. It was excerpts from one of Geno's last speeches before he died in 1984 after his thrird recurrance of cancer.

What was on the video - and the memories it triggered - reminded me how much I learned from Geno and the others I was privileged to work with in those days. Those lessons about building organizations and working with and managing people toward a goal have never failed me and are the root of how I have approached my work at PHA.

I converted the videos to DVDs for Geno's friends and posted them to You Tube (in two parts) for their value to another generation. Both parts are below.

From Mountains to Rivers...

2010-05-31T09:43:00.000-07:00

From climbing Mt. Kilimanjaro to swimming the Mississipi, people whose lives are touched by PH continue to find amazing ways to help fight against this disease. They are our heroes.

Lil Long' s best friend Nicky Roberts died of PH in 2007. Lil says they did everything together and now on Sept 4, 2010, the day after the third anniversary of Nicky's death, Lil - who was diagnosed with PH herself shortly after Nicky's death - will swim the Mississippi in her friend's memory. Both women had been event planners and Lil Long will be using her swim to raisie funds for PHA. You can help, too.

Here's Lil's interview on WXVT Delta News...

A Quick Lesson in Persistence

2010-05-31T07:54:00.000-07:00

When Elisabeth Williams, who works with PHA's grass roots advocacy and awareness efforts, told me the story of what Dick Turnsall had accomplished in working with his member of Congress, I thought it carried a great message on what one person, sticking with it, can accomplish. Thanks Dick for what you've taught us and Elisabeth for sharing his story in your guest blog.

If you want to know something about what a little persistence and initiative can get you, Dick Tunstall, one of PHA’s 435 Campaign members can fill you in. As a member of the 435 Campaign the last three years, Dick contacted his Members of Congress about pulmonary hypertension (PH) through letters and visits. Last year, Dick set his sights on getting Representative Himes (D-CT) to cosign H.R. 1030 the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009.

The road began in July 2009, when Dick started working with Representative Himes’ staff to schedule a visit with Mr. Himes in his Washington D.C. office. After several months of back and forth, which included Dick inviting Representative Himes to his Support Group meeting, Dick met with Himes in October 2009. The meeting was very successful--Representative Himes expressed interest in co-sponsoring H.R. 1030!

But the story doesn’t end there. By early March 2010, Tunstall was disappointed to find out that Representative Himes had still not signed onto H.R. 1030. Instead of giving up, Tunstall, persisted and followed up with Mr. Himes office again. The result of all of that hard work? As of May 24, 2010, Representative Jim Himes (D-CT) is officially listed as a co-sponsor on H.R. 1030.

Good work Dick—indeed, persistence does pay off!

Find out how you can help with the PH Research and Education Act in the House (H.R. 1030) and in the Senate (S. 2803). Click on Read About This Bill at the top or bottom of each page to find out whether your Member of Congress or Senators are co-sponsoring the PH Bill.. Learn more how you can connect with your own Member of Congress through the 435 Campaign

National Journal today...

2010-04-29T13:04:00.000-07:00

A few weeks ago Donna Pederson, a 24 year old PH patient and nurse, PHA's good friend Congressman Kevin Brady and I agreed to a video interview with the National Journal. Their video publications are available to all Capitol Hill offices (and heavily trafficked by them), as well as to other subscribers.

I thought they did a pretty good job with the exception of reporting patient survivability at 2.8 years for 50% of patients. That number is true for patients not on medication. With 9 treatments availble - 8 since 2001 - survivability continues to improve.

At any rate, here's the video. See what you think.

Time to move...again

2010-04-29T06:29:00.000-07:00

On February 16, I posted that construction permits went up for PHA's 6th move in 11 years.

Well it's time.

Last weekend the cubicle walls came down and were moved to our new space on the 10th floor. This week, as you can see from the pictures on our 4th and 5th floor, it's been kind of like a sweatshop here at PHA. Starting tomorrow and continuing on Saturday, our computers and phones will make the move and our staff should be reunified on a single, functioning floor on Monday.

Wish us luck!

Candid Reflections on Lung Transplantation...

2010-04-29T05:59:00.000-07:00

Exactly a week ago, PHA had the opportunity to deliver a Lunch Symposium at the International Society for Heart and Lung Transplantation.

As a high level sponsor of the ISHLT Conference, Gilead Sciences had the right to this block of time but decided a PHA presentation would be more appropriate. They covered the costs for the lunch event and we accepted and developed the content.

I opened with a slide presentation titled Blending the Patient and Medical Communities: The Pulmonary Hypertension Association Model. Truth be told, it was really more about it's subtitle,,,Heroes. I told brief stories about individuals like Bonnie Dukart, Diorothy Olson and Barbara Smith, people who by their actions made a difference and built this organization.

Following that, we presented a video PHA developed in 2005, featuring stories of patients experiences pre and post transplant. I hadn't seen it myself in quite awhile and found it quite moving. One of the doctors who saw it suggested it would have value as a training tool for medical professionals coming into the field. I think we'll explore that possibility.

We were fortunate to have Dr. Reda Girgis of Johns Hopkins conclude the program with a presentation on Challenges in Lung Transplantation for PAH. He educated the audience on a number of transplant issues specific to PH patients.

It was a goos session and a great chance to introduce the work we are doing to the transplant community.

ISHLT..two surprises.

2010-04-27T15:17:00.000-07:00

I spent most of last week at the International Society of Heart and Lung Transplant meeting in Chicago.

Their staff did an amazing job navigating around an unexpected problem. The eruption under the Eyjafjallajokull glacier in Iceland made it impossible for over 500 European registrants to attend...and many of those were speakers. With 48 hours notice, most of the speakers were able to present their slides remotely and well. It was an amazing achievement and one I hope we'll never have to match ourselves to at a PHA Conference.

A second surprise was much more pleasant. In an organization that historically has had little PH education, avery high percentage of content was focused on the disease. As a matter of fact, the Conference had a full day symposium on PH last Wednesday.

This explosion of PH information is due to the hard work of many of the physicians we work with at PHA. Two years ago, they formed a new PH Council within ISHLT and drew large attendance to strong PH sessions at last year's Conference in France.

Christa from our Med Services staff and I attended this year's Council meeting. The outgoing Chair, Dr. Ray Benza and incoming Chair, Dr. Myung Park led a dynamic discussion of their next steps in keeping PH as a topic of value and importance to the ISHLT membership.

PHA's next step is currently being worked out. We have offered to support the PH Council's educational process within ISHLT by mailing the next issue of our medical journal to all ISHLT members. Its topic is Transplant. We'll be sending the ISHLT board a review copy in the next week or so. Dr. Debbie Levine, Dr. Myung Park, and Dr. Ray Benza, all Council members, have worked on the issue...with Dr. Levine being the primary editor.

I feel fortunate to have been able to attend the ISHLT meeting. It was another important element in the fight against PH and another chance to see how the interconnectedness of our community can drive positive change for the good of all.

...And, while that's a pleasure, I'm pleased to say it is no longer a surprise.

And that's how awareness grows...

2010-04-20T06:02:00.000-07:00

PHA hosts over 20 message boards and lists servs. Many support the work of various committees, while others are active sources of broad communications for various segments of our community.

Lately, there's been a lot of buzz on the support group list servs about two pieces of video involving support group leaders.

Ellen Harris, a support group leader from Northern Virginia, is featured on a PH segment on the PBS show, Healthy Bodies, Healthy Minds (scroll down to episode 1506). North Carolina support group leader Doug Taylor reported that WTVI in Charlotte, NC also had a recent program on PAH. (Once on the page use the arrow at the bottom to scroll down to the Pulmonary Hypertension show). Host Joey Popp interviewed cardiologist Theodore Frank, MD, and pulmonologist Doug Kelling, MD as well as local PH patients (and twins) Linda Miles and Brenda McCallum.

Then there's the continuing coverage of the Kilimanjaro Climb which has generated over two million readers and viewers across more than 70 articles and features. I'm sure you'll enjoy one of the most recent from WQED in Pittsburgh.

While the PH community may not be large compared to other diseases, our drive to get our story out is creating awareness and opportunities beyond our numbers.

I hope you'll take a moment to find ways to get involved through the Awareness pages on the PHA website. It can make all the difference.

Beyond expectations...and yet

2010-04-16T13:54:00.000-07:00

On October 9, I posted a blog titled, Keeping our values straight. It was about the launch of our scholarship efforts for PHA's 2010 International PH Conference and why this event is so important for patients and their families..

Yesterday, we had our monthly Executive Committee call with leaders of the PHA Board.

Patty, our Finance Director reported that our Scholarship Fund has grown to $219,305. To understand what this means, you have to think about the number of PH patients in the U.S. in proportion to diabetes (23.6 million), asthma (16.4 million), Bi-polar disorder (5.7 million), Alzheimers (5.3 million) or many others. Campare these numbers to the 20,000 to 30,000 diagnosed PH patients in the U.S. Our numbers are small and so our climb to make the changes we need and want on any issue is steep. It is a climb that involves everyone's best efforts...and, in that, this community has never disappointed.

That our community is able to provide this kind of support for patient scholarships - to what has been described by many who attend as a life-changing event - says a lot about the PH community's values.

We're proud of the scholarship program. There's no question it's hard work to raise these funds but it's so worthwhile. My only regret is that, even at this extraordinary level of support, there are still many patients who have to be declined for scholarships. My dream is that, someday, we will be able to endow this program at a level high enough to guarantee that we can fully meet the need and turn away no patient who wants to come..

Kind words spotlighting PHA chats...

2010-04-12T10:27:00.000-07:00

It's always nice to receive kind words Last week, Chris Akins sent those and also put a spotlight on PHA's chats. I thought I'd share his note with you...

I wanted to personally thank you for the PHAssociation and the online chat that you provide. My wife of 14+ years Marla was diagnosed with PAH 16 months ago. Last March she was in right hear failure and had a mean pulmonary pressure of 138. At that time she was placed on Flolan and a host of oral meds. If it were not for the online chat and the ability to connect with others with PAH I don't think she could have moved past the initial shock. Today, I am over joyed to report that she returned from her quarterly check up with Dr. James Gossage and her pulmonary pressures and heart size are within the range of normal.

From March 2009 to January 2010 she has successfully been transitioned off of Flolan to Tyvaso and her oral meds have been reduced. The mental stigma of PAH still remains but the PHA chat is a constant source of hope, joy, sadness and renewed belief that together we can overcome. The community that PHA provides is instrumental in not only the physiological well being of PAH patients but their mental well being as well.

From a caregivers perspective and being in the medical field for the past 10 years I have to say PHA is a God send. I had the privilege of attending the PHA on the road in Orlando last year. WOW what refreshing change of paradigm of patient, physician, and pharmaceutical interaction. But most of all it is a great opportunity for me personally to interact with other care givers and PAH patients via the online chat. A year ago I was one who didn't know where the road was going to take us and now I find myself a unique position of knowing where the road could go and sharing it with others.

Again Thank You and PHA for all that you do to make things a little easier.

Anyone in the PH community can connect with a scheduled (or unscheduled) chat through the PHA website.

Blogging for Conference...

2010-04-08T15:18:00.000-07:00

Nope, this isn't the shortest blog ever. It's just to let you know I did blog today...but on PHA's new Conference page.

Take a look and see what Bonnie Dukart, one of PHA's early and great leaders, had to say about the event and get a picture of how it evolved.

Keeping government focus on PH research...

2010-04-07T14:31:00.000-07:00

PHA's Washington Rep, Gavin Lindberg sent us a report today from the NIH on the investment made in PH research with funds from the economic stimulus bill. PHA joined with the biomedical research community last year in encouraging Congress to provide an additional $10 billon to the NIH as part of the American Recovery and Investment Act (ARRA). NIH has been producing “ARRA Investment Reports” on diseases that benefitted significantly from stimulus funding. Only a handful of rare diseases have been the subject of these investment reports and PH is one of them. Here's the report...

ARRA Investments in Pulmonary Hypertension (PH)

Public Health Burden

PH is an irreversible, malignant elevation of pulmonary vascular pressures that causes death due to failure of the right side of the heart. Although idiopathic pulmonary hypertension is considered a rare disease, its true epidemiology is being called into question because of an increasing awareness that PH may occur in the setting of more prevalent respiratory diseases such as COPD, that it can develop in systemic diseases such as sickle cell anemia, and that right-heart dysfunction may actually occur earlier in the disease pathogenesis than previously recognized. The annual number of hospitalizations attributable to PH in the United States rose significantly from 1980 to 2000, especially for women, and worldwide estimates of all-cause PH are increasing.

Treatment

Within the past few years, drugs to dilate the vasculature have become available for use in PH. Current therapies modestly extend survival but do not lead to regression or cure, and no clear indicators of therapeutic efficacy, such as surrogate markers, have been identified. The sole alternative when medical therapy fails is lung transplantation, and it extends survival only minimally. ARRA funds are supporting projects to:

• Identify new ways to direct current vasodilatory therapeutics to the pulmonary vasculature using stem cell-based drug delivery.1

• Use stem cell-based drug delivery methods to test newly identified interventional targets.2

• Design biologic delivery vectors to provide stable and selective production of therapeutic gene products in the pulmonary vasculature.3

• Use cell-specific diagnostic imaging to deliver disease-modifying drugs directly to relevant pulmonary vascular lesions.4

• Identify biomarkers of treatment response that can guide therapeutic decision-making in pediatric patients suffering from idiopathic PH. 5

• Test new devices for acute right-ventricular support during periods of critically elevated pulmonary vascular pressures that cause right-ventricular failure.6

PH Disease Pathogenesis

As understanding of PH has evolved, new hypotheses have been proposed that better describe its development. ARRA-funded projects include research to:

• Determine the relationship between innate or adaptive immune responses and the development of pulmonary vascular disease.7 8

• Delineate the pathophysiologic and genetic factors specific to the heart that may contribute to the development of integrated pulmonary vascular–right-heart disease.9

• Study the ultrastructural and intracellular components of phenotypes that are abnormal or become impaired in function during the development of PH.10 11

• Probe the biologic reasons why more women than men develop PH 12

Pulmonary Vascular Biology

While PH is well-known as originating within the pulmonary vascular–right-heart axis, it has become increasingly apparent from PH studies that our fundamental knowledge of the pulmonary vasculature is incomplete. ARRA funding is supporting important basic and translational investigations in pulmonary vascular biology to:

• Examine the critical roles of oxygen and oxygen deficiency in pulmonary vascular smooth muscle function.13

• Explore the mechanisms by which other oxygen-based compounds, such as carbon monoxide and nitric oxide, regulate lung cell function during normal physiology, injury, and repair of vascular damage.14 15

• Define the unique characteristics of the cells lining the vascular surface in relation to function and location along the pulmonary vascular bed 16 and uncover critical signals needed for lung endothelial cells to form healthy physiological barriers.17

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1. 1RC1 HL100807-01 Prostacyclin-secreting Cells as Therapy for Pulmonary Artery Hypertension – Dixon, Richard (TX)

2. 1RC1 HL099980-01 ACE2 as a Target for Pulmonary Hypertension Therapeutics – Raizada, Mohan and Grant, Maria (FL)

3. 1R01 HL092941-01A1 Development of Double-targeted Vectors for Long-term Vascular Expression in vivo – Curiel, David (AL)

4. 1RC1 HL100849-01 Zipcode Based Nano-imaging of Hypertensive Pulmonary Arteries – Tuder, Rubin (CO)

5. 1RC1 HL099786-01 Quantifiable Biomarkers of Vasodilator Therapeutic Response in Children with IPAH – Everett, Allen (MD)

6. 1 RC1 HL100585-01 Minimally Invasive VAD for Treatment of Acute Right Heart Failure – Corbett, Scott (MA)

7. 3 R01 HL082662-03S1 An Autoimmune Basis for Pulmonary Hypertension – Nicholls, Mark (CA)

8. 1 R21 HL092370-01A2 Muscularization of Pulmonary Arteries Induced by an Adaptive Immune Response – Grunig, Gabriele (NY)

9. 3 P50 HL084946-03S1 Molecular Determinants of Pulmonary Arterial Hypertension – Hassoun, Paul (MD)

10. 3 R01 HL086939-03S1 Vascular Collagen Accumulation & Mechanical Mechanisms in Pulmonary Hypertension – Chesler, Naomi (WI)

11. 1 RC1 HL099462-01 Impaired Mitochondrial Fusion in Pulmonary Arterial Hypertension – Archer, Stephen (IL)

12. 1 R21 HL093181-01A1 Role of 15-lipoxygenase in Enhanced Pulmonary Vasoconstriction in Females – Pfister, Sandra (WI)

13. 2 R01 HL067191-05A2 Chronic Hypoxia and Pulmonary Vascular Smooth Muscle – Shimoda, Larissa (MD)

14. 2 R01 HL060234-10A1 Heme oxygenase1/Carbon Monoxide in Lung Vascular Injury – Choi, Augustine (MA)

15. 3 R01 HL060917-10S1 Nitric Oxide Production and Reactions in the Lung – Erzurum, Serpil (OH)

16. 3 P01 HL066299-08S1 Lung Endothelial Cell Phenotypes – Stevens, Troy (AL)

17. 3 R01 HL088328-03S1 Natriuretic Peptides in Pulmonary Endothelial Cell Barrier Function – Klinger, James (RI)

The quiet side of the fight...

2010-04-07T11:57:00.000-07:00

Today was about one of those quiet pieces of work that makes a big difference for PH patients...

Several years ago, PHA noticed that many patients who applied for Social Security Disability were being rejected. While most negative opinions were reversed on appeal, a lot of time and energy was lost.

That led us to a series of meetings with the Social Security Administration through which it became clear we had two major issues to resolve.

The first - and quicker to solve - was to provide better training related to PH cases for the Social Security adjudicators. About a year ago, with the support and cooperation of the Social Security Administration, we were able to script an official SSA training film, through the volunteer efforts of Dr. Adaani Frost. That film is now available for the adjuducators and you can see it too.

The second issue took a major leap forward today.

The standards on which the SSA makes disability judgments for PH patients were written at a time when there was much less understanding of the disease. Consequaently, they need to be updated to allow for a fair judgment. For the past two months, a team of PHA volunteer physiciansand lay experts, led by Drs. Ron Oudiz and Robyn Barst entered into discussion with SSA physicians and administrators. This resulted in the development of a targeted presentation by Dr. Oudiz that was made today. A very rich and extended discussion led by Drs. Oudiz, Barst and Hap Farber followed. The education they provided and followups they were invited to provide will play an important role in helping SSA's Working Group complete the task of creating practical, meaningful and fair criteria for PH patients applying for Social Security disability.

A special thanks to Hap Farber, M.D., Alan Harder, Gavin Lindberg, Jennifer Jaff, Katie Kroner and Carol Vreim who worked extensively with Drs. Oudiz and Barst on this project, to Drs.Val McLaughlin, Greg Elliot, Adaani Frost, Mike McGoon, Nick Hill, Erika Berman Rosenzweig and Charlie Burger who provided medical review and to Margaret Beardsworth who staffed the project.

Issue by issue, it's always gratifying to see how ready members of the PH community are willing to jump in when needed to move our common cause forward.

You can see the slides presentation from today's meeting by going here and then clicking on other meeting resources in the right column.

Fitting the pieces...

2010-04-05T06:52:00.000-07:00

About 18 months ago, PHA was funded by the Medtronic Foundation to develop a program we had conceived long ago...and have recently grown to make practical. The Defined Populations Project will let us reach out and create programming in five new areas: newly diagnosed patients, young adults with PH, PH patients with associated illnesses, parents of children with PH and caregivers. Surveys and focus groups have led to advisory groups and now new programming for each of these groups.

Recently, I had the opportunity to begin to explore how we can work with PH pediatricians to integrate into and support the family aspects of these growing segments of the PH community.

Following several calls between leaders of PHA's Scientific Leadership Council and the recently organized PPHnet group of pediatricians, I was invited to meet with them in Banff in the Canadadian Rockies. They had gathered there for the 3rd International Neonatal & Childhood Pulmonary Vascular Disease Conference and for their own planning session. The meeting organizers picked a beautiful site. Banff is truly one of the world's special places.

While there are strong connections between the PH pediatricians from this group and PHA - Drs. Ivy and Berman Rosenzweig sit on PHA's SLC and Dr. Barst who is on their advisory group is a past SLC Chair -I appreciated the opportunity to present background on PHA for those who are not as familiar with us.

The conversations were produictive and are continuing. We look forward to developing this relationship in ways most productive for our patients and the entire PH community.

From 200 to 2,000 in 2 years...

2010-04-01T15:25:00.000-07:00

Jack and Marcia Stibbs, Matacha Saul and the great and loyal volunteers of The Woodlands, Texas are rainmakers in support of PH research!

Jack's first event for PH research was a golf tournament in 1999. It grew and grew, until three years ago, Jack said, "I think it's time for a changeup."

And changeup he did...from golf to bugs. Well, allright, crawfish.
That first year I went to the Bug Boil. It was a great and sunny day, attracting a crowd of over 200people. We ate a lot of crawfish, alligator and potatoes, drank a lot of beer and enjoyed a great zydeco band. It was a great and fun day.

This year, two years later, 2,000 people consumed 6,000 lbs of crawfish, 160 lbs of alligator and 2,000 pieces of chicken. Oh, and there was a refined name change to Crawfish Festival....with even more fun.

Last Saturday's event had to turn people away - and what I hear from Jack - is already planning on growing from A Houston-area event to a regional event in 2011.

Over the years, the Woodlands team has raised well over a million and a half dollars for research through their great efforts and built tremendous awareness of pulmonary hypertension in the Houston area. Despite their strange food tastes (sorry Jack, I couldn't resist!), all of us at PHA are deeply grateful for what they have done and continue to do to fight this disease. THANK YOU TEXAS!

Enjoy a great slideshow of this event

From Kilimanjaro to Times Square

2010-03-31T17:04:00.000-07:00

Today, Toni Haubert from our friends at Weber Shandwick sent this message...

"The climbers appeared on the [Times Square] sign at 4:30 p.m. ET on Friday, March 19, 2010. The attached photo captures the moment – the photo title reads, 'Climbers summit Mt. Kilimanjaro to support pulmonary hypertension research.'"

It struck me that two doctors and one physician assistant's climb to one of the loneliest and most isolated spots on earth generating such awareness of pulmonary hypertension is amazing.

Over 1.2 million readers and viewers have had learned of pulmonary hypertension through their story. An additional 1.6 million people walk past the Times Square sign each day.

Wow!