Monday, January 30, 2012

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 patientsknowledge 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.

No comments:

Post a Comment