I'd like to tell you a story.
The first time I met Tom Lantos, he said to me, "I have to apologize to you. Annette and my interest in this illness comes from our love of our granddaughter who was recently diagnosed with pulmonary hypertension. We did nothing for this illness, we didn't even know it existed until this happened."
Tom, I want to say to you that your path toward making a difference
is exactly the same as that taken by thousands of our other
members. Pulmonary hypertension is deeply personal. As you know
more than most in this room, we are defined not by how
we come to the issues that life puts in front of us but how we
face those issues.
By that standard, you and Annette are our heroes. By that standard, Charity, who is facing this illness with grace and style…and courage beyond her years is our hero.
But…there are other heroes that I have the privilege of working with every day. Let me speak about some who are in the room with us tonight and a few who are not.
There are the doctors and nurses, like Al Fishman, Bruce Brundage, Mike McGoon,
Robyn Barst, Dave Badesch, Jim Loyd, Lew Rubin and Stuart Rich
and others who began working with pulmonary hypertension when
there were no treatments - and that was not so long ago - when
there was little interest at the medical schools and in professional
associations. While there were no disease-specific treatments
before 1996, there were only questions and these doctors
and others like them began and led an exploration that is bringing
us to life-extending treatments, greater understanding of the
mechanisms of this illness and a reasonable expectation - with
God's providence and our hard work - that a cure is possible.
There are the family members, people like Ed and Judy Simpson, who with our other founders and their spouses, decided in 1994 that they could put on an international Conference…after all, they had gotten through 1993 with a budget of almost $5,000. Their gift - the gift of taking a risk for a good and important cause - brought us to the point today where our Conferences are truly international events drawing close to 1,000 participants, offering the medical community high quality scientific sessions and patients and their families extraordinary educational and fellowship opportunities. Their gift has motivated so many others, including Jack Stibbs, PHA's board chair, who has organized, in his daughter Emily's honor, what sometimes seems like every person in his Woodlands, Texas community. This year they met the goal of raising one million dollars for PH research. That spirit of making the impossible possible also flows in Carl Hicks, a former Special Forces Colonel, who more and more regularly comes to Washington DC from Washington State to bring his daughter's - and his family's - compelling story to the Halls of Congress.
They are our heroes.
And, most of all, there are the patients, people like Hannah Carr who graduated from high school last month as a star basketball player, wearing her Flolan pump continuously from the age of six, until recently transitioning to another drug…she has acted as a spokesman and model on how it is possible to live a rich and full life while managing this illness. There is Pat Paton, who called to welcome every one of the first 350 members of this organization and continues to instill a spirit of service and connectedness among our members. And Gail Boyer Hayes, another long-term survivor who has brought her broad talents to the creation of the 280 page PH Patients Survival Guide described in your program. There is Shirley Craig a patient who edits our newsletter, Pathlight…and Jerry Wojciechowski, who collects and tells the stories of fellow patients in Persistent Voices.
These are just a few among our many, many heroes.
PHA's belief is that every patient has the right to do as much - or as little - as they are willing and able in the fight against the illness that has entered their lives. Our obligation is to create the opportunities for that involvement.
One of my favorite examples of this spirit is our PHAware program in which over 100 patient volunteers have been involved in meeting with their local media - almost 500 newspapers, TV and radio stations, so far - using our electronic presentations of the illness and telling their own stories. They are truly building awareness of an underdiagnosed but increasingly manageable illness…
I'll conclude where our community began...
From four women around a kitchen table in Florida in 1990, talking about an illness so ignored that an NHLBI registry 10 years earlier had identified only 193 patients in the entire U.S. to where we have come tonight, ours is an American story of determination and optimism in the face of adversity.
We remember with respect and appreciation the heroes we have lost…and the heroes who continue to drive us forward.
PHA is an organization of hope. We thank you for joining us tonight and we thank the mysterious pianist we have finally been able to identify as Dr. Rice and most of all we thank you, Charity, not simply for sharing your talent… but for your amazing grace.
Thank you.
