Friday, April 29, 2011

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.

Wednesday, April 6, 2011

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.


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.

Friday, April 1, 2011

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!)...