Awareness Month…planes and trains and other things

Zebra in the Fresno crowd

PH Awareness Month...  

It’s a footrace – an important footrace – with a lot of zig zag.  To explain, I’m using this blog to fill out what I wrote in earlier blogs and talk a bit about what I saw and did as I traveled for PHA just before and during this important time for building PH Awareness.

Personally, Awareness Month is also a time to feel the pulse of our community and better understand the effectiveness of current programs and future directions.

When I first came to PHA in 1999, there was little time or financial ability to travel but I was struck by the Awareness Week (that’s what it was then) pioneers who were tabling at several hospitals around the country.  They were the backbone upon which we built the great Awareness Month activity we are seeing today. 

As always, my November Awareness Month travels began in late October.  On the 23^rd of the month I made my first stop in Denver to attend the induction of Dr. David Badesch into the Colorado Pulmonary Hall of Fame.  Dr. Badesch is one of the great clinicians and researchers in the field and a friend who helped build medical side of PHA’s work.  It was wonderful to see him receive this great honor.

After less than 24 hours in Denver I went on to Fresno, California.  Many months earlier, I had promised Dr. Vijay Balasubramanian, Director of the PH program at UCSF Fresno, and Perry Mamagonian, the very active Fresno support group leader that I would be there.  The night before the event, On October 24^th, I had dinner with Dr. Bala as he is called and several administrators and staff at his hospital.  He said to me, “You know, we have worked hard to build a strong PH program here in Fresno.  When I looked at PHA’s PH Care Centers accreditation guidelines, I saw that we had everything needed…except a nurse coordinator.  I went to my hospital administrators and told them that I believed the accreditation program is important and asked their help.”  What he said next was striking in realizing how the new PHCC program is already improving quality of care for patients.  “My administrators supported me. Meet my new nurse coordinator.  She started last week.”  He went on to describe how his nurse coordinator was already tapping into connections with other nurse coordinators from PHA’s PH Professional Network (PHPN) for mentoring.  Knowing all the work that has gone into building the PHCC accreditation program, it was striking to see how it is already beginning to impact practice for the good of patients.

 On Saturday October 25^th, I attended the Fresno Annual Fun Walk.  I was impressed at how many people came and reminded how important it was to have a PHA presence at such events.  I truly wish we had the opportunity to attend all these great events…but with an annual calendar that includes 90 special events, 60 PHA medical education meetings, 15 Building Medical Education in PH meetings, 4 regional patients conferences and quite a bit more, that has become sadly impossible. We have grown to have one PHA meeting almost every two days.  All are important in our quest to change the history of this disease…whether or not we are staffed to attend.

Later in October 25^th, I flew to Austin, Texas for the annual conference of the American College of CHEST Physicians.  PHA attends conferences like this where we exhibit and connect with medical professionals, develop alliances and host our own committee meetings.  CHEST is always a good opportunity for all these things. In the Austin airport I saw the banner to the right.

After several days back at the office, I attended the Baltimore Zoo Walk on Sunday, November 2. Later in the day, I traveled to San Francisco for two days of meetings with our corporate partners at Actelion and Gilead.  It is an opportunity to let them know how we have used their financial support during the past year and where the organization is heading in the next.  At Actelion, I had the opportunity to speak to their staff at their Awareness Month Kickoff Luncheon.

On to New York City on Nov. 6 for two events.  First, a visit to NASDAQ where our PSA's played on the NASDAQ stock exchange screen (the largest screen in the world!). Then on to our New York Chapter Gala.  It was a terrific event honoring Dr. Evelyn Horn as a pioneer in PH and her patient, singer Chloe Temtchine and Shad Azimi.  Jeffrey Hayzlett, host of Bloomberg TV’s C Suite was a great MC.

After the New York Gala, I headed to Syracuse for the Sarah Smiles event, held at the Camillus, NY Fire Department.  It’s an event I had been hoping to get to for several years.  I had met Sarah Peek and her parents Michelle and David and little brother Nathan in 2009 at the Long Island Support Group Fun Walk.  Sarah was a lovely 6 year old whose spirit

really struck me…and whose loss in 2010 was deeply saddening.  It was great to see Michelle and David again at this annual fund and friend-raising tribute to Sarah – and to meet Sarah’s grandma, Bonnie Corey, who I’d previously spoken to by phone.

From Syracuse I headed back to the office for four days of 2015 budget sessions.  Twenty-two budget presentation meetings were held on Monday, Tuesday, Wednesday and Friday during the week of November 10.  Thursday was reserved for PHA’s Annual Congressional Luncheon.  This was a well-attended event which included encouragement from Sen. Bob Casey of Pennsylvania and NHLBI Director Dr. Gary Gibbons and Congressional office visits by the many patients, family members and medical professionals who attended.  Before the event, many of PHA’s members called their Members of Congress requesting that they or someone from their office attend the luncheon and saying that they would call back to hear how it went.  As always, our community’s efforts at the local level really helped build Congressional interest and attendance and our clout at the national level.

Shortly after the last budget meeting at 4pm on Friday November 14, I headed back to the airport for a late flight.  This time it was a little different.  I got to spend the weekend with my daughter and son-in-law in Germany before continuing on to Paris to meet with leaders of European PH Associations (including France, Germany, Italy, Hungary, Norway and the United Kingdom).  As the number of PH associations continues to expand globally, meetings like this help to us all to collaborate better and find ways to build programs of value to our communities.  While I was in Europe, PHA launched the first CTEPH Awareness Day as part of PH Awareness Month with great participation.  It was exciting to see that our European partners were already aware of and excited about tis new effort.

Following the European meetings, I flew to Chicago for PHA’s Midwest Chapter Hearts Phor Hope Gala on November 22.  I particularly wanted to be there to acknowledge Dr. Stuart Rich who was receiving an award for his career-long and ground-breaking work as one of the founders of the field of pulmonary hypertension.

The next morning, I flew home for more budget work and a very quiet and restful Thanksgiving!

There is so much that I saw during Awareness Month 2014…and much more that I could not see. 

PHA is based on the principle that a strong community can change our world for the better. 

Awareness Month is one important and vibrant proof of that principle.

Welcome to PH Awareness Month!

Thanks go this week to Katie Kroner, PHA’s Director of Advocacy and Awareness. Katie has been with PHA for nine years and helped organize a great many Awareness Months. In her guest blog, Katie introduces PH Awareness Month 2014 and gives you links to easy things you can do to make a big difference.

By the way, I do intend to get back to writing my blog again as soon as I can find time. The past five days have been a pretty good example of what’s been keeping me busy beyond the normal workload. Thursday was a stop in Denver where Dr. Dave Badesch was inducted into the Colorado Pulmonary Hall of Fame. Dr. Badesch has been a backbone in PHA’s development of a strong medical community. Friday to Fresno, Calif., where I was hosted by Perry Mamagonian and Dr. Vijay Balasubramanian. I was there for the 3rd Annual Fresno Six-Minute Marathon and Fun Walk on Saturday and got to see many old friends and make many new ones. Saturday evening on to Austin, Texas, for the American College of Chest Physicians (CHEST) Conference where I had many side meetings. After an eye-opening 5 a.m. CTEPH session on Monday (and a few following meetings), I flew back to Maryland to get back to my desk on Tuesday morning. Travel will slow after Dec. 15, and I look forward to being more active with my blog again.

Rino

Welcome to PH Awareness Month!
Don’t Miss Two Big Opportunities on Nov. 1

Pulmonary Hypertension Awareness Month kicks off this Saturday, Nov. 1, with two not-to-miss opportunities.

1. Join Color the World Periwinkle Day. On Nov. 1, wear periwinkle and take a photo. Hand out wallet cards. Share with your online networks. Your imagination is the limit!
2. RSVP by Nov. 1 for PHA’s Congressional Luncheon and National Advocacy Day. This free event gives you the opportunity to have your voice heard by your Members of Congress and their staff. Even if you can’t attend, get involved by inviting your Members of Congress or their staff to the Luncheon (and following up to see what that person thought and will do).

Lighting the Way to a Better Tomorrow

This year’s Awareness Month theme is Lighting the Way to a Better Tomorrow. Too often, a pulmonary hypertension diagnosis feels like being shoved into a dark corner. Who can see that you are sick? Who understands what you’re going through?

Each time one person tells another about PH, they dispel a little of that darkness. Whether you are sharing your diagnosis story with a reporter, advocating before your Members of Congress, fighting back through fundraising or talking about PH with a neighbor, you are a light for a PH patient. Together, we are Lighting the Way to a Better Tomorrow.

You are Our Hero

If you read this blog regularly, you know that Rino often shares the stories of PH heroes – everyday people who are changing the course of pulmonary hypertension by ending isolation, inspiring others and proving that “hope is a verb.”

What you’ll discover during Awareness Month is that you are one of those heroes. Whether you are sharing your story by pitching it to the media, creating a personal fundraising page or posting a photo of your clot during CTEPH Awareness Day on Nov. 18, you are part of making life better for PH patients everywhere. And that’s something big.

Don’t forget to send us your awareness month stories, photos and videos so that we can share them with the entire PH community.

Awareness Month: Voices from the PH Community (#5)...

Here's another guest blog.  The McNiff family inspired PHA staffer Ellen Leoni to write...  

After Britt and Sean’s 4½ year old daughter, Mimi, was diagnosed with PH, they found support through a parents’ PH group on Facebook. Britt says, “Seeing what other people were creating for awareness was sometimes shocking but always validating and inspiring.”  

Not long after, Britt was empowered to fight back by raising awareness and funds for the Robyn Barst Pediatric PH Research and Mentoring Fund by running the Smuttynose Rockfest half marathon in Hampton, New Hampshire. Through their personal fundraising page, Facebook and email, and with passion and dedication, the McNiffs raised more than $12,600 in honor of Mimi and in support of pediatric PH research.

PHA’s strength comes from community members like the McNiff’s who are dedicated to fighting this disease and finding a cure for pulmonary hypertension. Watch this incredible video of the McNiff family as they all prepared for Britt to run the half marathon... 

This is number 5 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too. 

Awareness Month: Voices from the PH Community (#4)…

Here's a guest blog from PHA's webmaster, Diane Greenhalgh, written as we complete week one of Awareness Month...

We are just a week into Awareness Month and so much has happened, so many people are making a difference already!

We kicked off the month on Nov. 1 with PH Online Awareness Day. The PH community worldwide took part by sharing information about pulmonary hypertension, photos, videos, personal stories, blogging, emailing friends and publicizing their special events in November. 

There were a lot of posts that used our zebra theme and messaging from Sometimes it's PH: An Early Diagnosis Campaign. The community has really taken the zebra and run with it.  At the top of this blog, you can see the zebra themed awareness image above that was posted by the Latin American health awareness group Concientización De La Salud.

PH associations around the world also held events in conjunction with PH Online Awareness Day. In the United Kingdom they organized people to wear purple lips and in South Africa to share their letters to God.

PHers in the U.S. have so far garnered 60 proclamations declaring November as Pulmonary Hypertension Awareness Month from state and local governments across the country and the month has three weeks left! Michelle Holden in Florida secured 35 proclamations alone, and Jen Cueva from Texas used her proclamation in a letter to the editor in the Galveston Daily News. Read the letter to the editor

Others are doing so many other things, including tabling at local health centers, posting information at work, wearing purple and zebra stripes, and writing a paper in school.

This past weekend, volunteer organizers held seven events across the country in California, Maryland., Nebraska, New Mexico, New York and Texas. They raised awareness and funds for the cause through fun walks, 5Ks, a gala, a brunch and a six-minute marathon. The Texas group (Zebra PHriends!) was even on Good Morning Texas to promote their event and PH awareness. Watch the video below...

This is number 4 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too!

Awareness Month: Voices from the PH Community (#3)...

Just a few weeks ago, Carl Hicks spent 36 hours in the air for an extended weekend trip to Seoul, Korea.

The new Korean PH association had invited him to help infuse the same spirit of volunteerism that they had seen in PHA into their own new organization.

As an important part of his presentation, Carl had asked Colleen Brunetti, co-founder of PHA's Generation Hope group, to speak on film on what her volunteer involvement means to her.

It is a wonderful statement that was well received in Korea and has value for anyone anywhere interested in fighting back against the disease that has intruded into their lives.  So before PHA places Colleen's video on our website, here it is as an awareness month preview...



This is number 3 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too.

Here comes PH Awareness Month...

Every year PH Awareness Month becomes busier, with more opportunities to help our families, friends and neighbors learn more about pulmonary hypertension…but where did Awareness Month come from, how did it get started?

Earlier today I called Pat Paton, a PHA co-founder, to hear what she had to say on the subject.  Pat told me

…before there was an official Awareness Month or even Awareness Week, there were a few of us who would set up tables in hospitals and shopping centers.  PHA – or UPAPH as we were known then – would send brochures.  That was all we had.  Since we didn’t have much in the way of materials, we worked hard to get interviews with our local newspapers and TV stations.

You have to remember that all of this was very local, with activities taking places in the few communities where we had active members.  Even so, when we did these activities, we noticed that the number of callers to our 800 number, the telephone support line, picked up and we heard from people in the area with the disease who had not previously been connected to us.  While the numbers were not great, when we had 100 members and we heard from 25 new people, well, we thought that was pretty good!  

Today, PHA’s reach for Awareness Month is throughout the U.S. and beyond.  We have much more information to offer and plans and suggestions for our members and friends in getting the word out. (Here are 10 in print ...or, if you like voice and slides, take a look here!)

The essential element, though, is YOU.  Whether spreading PH awareness in person or electronically, our reach is only as large or as small as the number of patients, family members and medical professionals who are willing to invest time and talent in making a difference.

One way (actually 16 ways) to make that difference is to help launch Awareness Month with

Pulmonary Hypertension Online Awareness Day Worldwide November 1!

It’s a day of worldwide action online. PHA has made participating easy with plenty of ideas and sample messages for you to use. Even without social networking, you can share through email or by posting your story on our website.

So, you’re invited to help kick off Awareness Month on November 1 and continue on expanding awareness of PH.  Particularly this year, when our national conversations are so difficult, it’s important to let our fellow citizens know we exist, are working hard for positive change and need their interest and support.

Here’s a note that came in while I was writing this blog.  It shows the difference one person can make. 

Each of us can be that one person.

I'll try to post stories of inspiration and awareness on this blog throughout Awareness Month.

An awareness month journey...

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! 

Awareness Month is almost here...

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!

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

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...

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!