Facebook, Timeline and PHA...a banner opportunity

Chanda Causer is PHA's Patient Outreach and Services Manager.  Her team is involved in working with many of our new programs for patients and caregivers (including Generation Hope, PH Plus, Caregivers, Parents of Children with PH and Newly Diagnosed Patients.  They also put together a great many tools for patients and families and manage our e-mail Mentor Program.  And, Chanda manages PHA's social networking strategy...a really important effort to help us create awareness of this disease through Facebook Twitter and other electronic outlets.  As Facebook's new Timeline feature is coming online, we hope you'll use one of PHA's new Timeline templates (produced by Ellie Ganelin and Maya Mandaiker) on your page! Here's what Chanda has to say... 

PHA’s Facebook communication has come a long way. Our Facebook page was launched on October 7, 2009 and made 33 fans by the end of that day.  Over the years, it has provided a space for our PH community to learn, advocate and build relationships. It has served as an essential point of communication for those living with this rare illness across the US and around the world.  Today we have nearly 5,500 fans around the globe. 

PHA is moving to the new Facebook Timeline feature, which will reformat our Facebook layout by creating a new panoramic space for images. As you may know Facebook will transition all users to this new format on March 30.  In preparation for this switch, we’ve created five banner options for our Facebook fans.  We hope that all of our Facebook fans will use the PHA-centered banners to build awareness and spread the message of hope for those living with PH.   

Facebook continues to provide a platform for us to further our mission of providing hope for the pulmonary hypertension community through research, support, education, advocacy and awareness. We are building a well-informed social network. Please visit www.facebook.com/PulmonaryHypertensionAssociation today and share a memorable PHA moment with us...and choose the PHA Timeline template you like best! 

Rare Disease Day... February 29

Today is Rare Disease Day.

To mark the occasion, PHA partnered with the American Thoracic Society and pulmonary fibrosis groups for a Congressional briefing on pulmonary hypertension and pulmonary fibrosis.  About 40 Congressional offices sent representatives - many because our volunteer advocates contacted them and asked. 

Dr. Susan Shurin, the Acting Director of the National Heart Lung and Blood Institute, hosted and Dr. Seril Erzurum of the Cleveland Clinic and Chair of PHA's Research Committee told the story of the development of PH research and the encouraging story of where she sees it going.  As she spoke of the 9 treatments developed across three unique pathways (endothelin, nitric oxide, prostacyclin) - with two Nobel prizes given for this work - she spoke of new targets and movement towards a cure and the importance of research in this field to other diseases as well.  Her presentation was inspiring but no more so than Nicole Cooper's who spoke movingly of her own journey with PH from diagnosis to her recent operation to remove arterial clots (CTEPH).

When I came back to the office, I read Colleen Brunetti's great blog for Rare Disease Day.  Colleen, a fine writer from the mind and heart reminds us that a disease is not rare if it is in your own body, that treatments are not a cure. 

I encourage you to read Colleen's blog, too.

Pediatric research: The power of one...and a half

It never fails...

One person deciding to take action becomes a driver for a whole community.

Last Friday, PHA board member Steve Van Wormer e-mailed us a public service announcement he had made to support the pediatric research and mentoring that has become an important target for PHA.   We were all very pleased by the the great quality of what he put together...and especially the voice work of Steve's 9 year old son, Lucas.

When we receive a new tool for the community, we always put together a marketing plan to make sure that it is used for the most benefit. 

This time was a little different...

Steve and Lucas' work so obviously filled a need that the small number of people who received it began to move immediately.  It's already being embedded on Facebook pages and pushed out in other ways. 

At its conclusion, it links to the Robyn Barst Pediatric Research and Mentoring Fund which is close to its target for beginning operations.  That Fund page includes information and videos from doctors and parents talking about the importance of pediatric research and creating a body of physicians mentored to capably treat children with PH.

Little more than twenty years ago, PH began to develop as a research and clinical focus.  Now, we are beginning to see - and help drive - that growth among physicians working with children.  While broad PH research remains of critical importance and of benefit to all, pediatric PH research and developing knowledge and understanding of appropriate treatment of children with PH is coming into its time.

What people like Steve and his son, Lucas, are doing in support of the doctors who are building the pediatric field is making that time come faster.  It's a great partnership.

We encourage you to help further circulate the video at the top of this blog.  You can find it here.  Please click on "Like" and you'll be asked if you want it placed on your facebook page...please do. 

Right now, we're working on making e-mails available with an image of the video in them.  I'll update this blog when those are ready

Bruno Kopp: leader, hero, friend...

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...

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...

“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...

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.