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!

Busy day in Greater Washington...

Today was supposed to be a big ice storm in Washington DC...but the temperature held above freezing because we had a lot going on outside the office.

At an 8:00am breakfast in Bethesda, Maryland I had a chance to introduce Candice Abate, our new VP for Medical Services & Patient Education to PHA Board Chair, Laura D'Anna.  Laura was in town for an NIH meeting.

After that, I headed up the road to Congressman Chris Van Hollen's office in Rockville.

He is our local Member of Congress and PHA volunteer Conchita Watson had written him a letter during November Awareness Month telling him she wanted to talk to him about PH...and received an invitation in response.  The rest of our group was her friend and fellow patient, Georgia M., PHA's Advocacy and Awareness Director, Katie Kroner, our Washington rep, Gavin Lindberg and me.  It was a great meeting with Conchita and Georgia telling our Congressman what it is like to live with PH.  He was very interested in learning about the disease and we were able to give him a lot of information.   Our big issue was the reintroduction of our bill in the House and Senate (Katie and Gavin have been working with Senator Casey and Rep. Brady and others on that).  After we spoke, he told us he had read the bill and was glad to co-sponsor and would help to move it along! We will be following with his staff on that and another issue.

While that was going on, Debbie and Dr. Steve Mathai from Johns Hopkins were across the District line to do their interview on the show I blogged about yeasterday.  I was able to listen to the Kojo Nnamdi Show...and you can, too!  Once you click the link to the show's page, drag the white time line on the black bar to 24:33 to catch the start of the segment.

They were a great team, joined by Dr. Gregory Kato from NIH.  Many thanks for helping to expand awareness of this disease. 

...And what a relief we didn't have to cancel all this for ice!