PH Professional Network...another step forward

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...

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.

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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...

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...

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...

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

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.

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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...

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.