Carl Hicks, an advocacy hero

On Wednesday, June 6 Carl Hicks sat at a long table in front of the Senate Defense Appropriations Subcommittee and told his story and made his request.

A former Army Ranger, Lt. Col. Hicks (Ret.) spoke about his daughter, Meaghan, and her battle with PH.   He has done this many times before, several years ago visiting the offices of over 100 Members of Congress in a two day advocacy marathon.

This time, he was asking the Chair, Senator Inouye and Vice-chair Cochran and the Subcommittee members to once again add PH to the list of diseases impacting military families.  Such a listing will make PH researchers eligible for grant funding from the Department of Defense research fund.  Carl made his request as the Senators looked at him and pictures of his beloved Meaghan.

You can watch Carl’s testimony on the Senate Appropriations Subcommittee website  Drag the time bar beneath the video to just past 33:00 to see Carl

We thank Carl and all our advocacy heroes who are getting to know their own Members of Congress and educating them about PH.  One Member at a time, we can and are making a difference.

Research...

I talk a lot about PHA's four distinct research programs and the partnerships we have developed.  PHA is proud that in this small disease over a million dollars in research funding is provided through them each year.

What I don't talk a lot about is how much additional PH research funding is generated through our advocacy work.

Dr. Lisa Taylor's work is a great example. 

In 2005,  PHA began to look at the Department of Defense (DOD) medical research program.  Gavin Lindberg, who does a lot of our Capitol Hill work, began to collect letters from PH patients and family members in the military, explaining the importance of PH research to them.  (That's Gavin on the left, receiving an award from PHA's then Board Chair, Carl Hicks, a retired army Special Forces colonel.) In 2006, PH was listed for the first time as a disease eleigible for DOD research funding.

Today, Gavin wrote to let us know about Dr. Lisa Palmer at the University of Virginia who has received a grant for $946,875.00 to study aspects of pulmonary arterial hypertension. Read about her grant.

Advocacy can't do the reasearch.  It can't guarantee the creation of excellent research projects.  However, in a growing field with bright researchers, we can and do open doors and make new opportunities available.

Like our internal reseaearch programs, that's something to be very proud of, too!