Monday, November 19, 2012

Awareness Month: Voices from the PH Community (#7)...

Last Tuesday, November 13, we had our annual Congressional Luncheon.   It is always held on Capitol Hill and this year was in the Dirsksen Senate Office Building.  I particularly liked that because Senator Dirksen, who was a Republican from Illinois, was one of those large personalities who defined the greatness of American politics for me as I was growing up.

One of my favorite quotes from Senate Minority Leader Dirksen - one that should be well remembered by politicians today - was...
I am a man of fixed and unbending principles, the first of which is to be flexible at all times.
We were pleased to have about 100 Congressional staffers and PHA members attend the event.  Carl Hicks emceed and introduced a number of speakers, including Senator Bob Casey of Pennsylvania (who has championed the Tom Lantos PH Research and Education Act in the Senate) and Dr. Gary Gibbons, the new Director of the National Heart Lung and Blood Institute.  Both spoke knowledgeably about our work and Dr. Gibbons remarked on PHA's long and productive partnership with his Institute.  Dr. John Berger, a pediatric PH specialist at Childrens National Medical Center in Washington, DC, discussed issues related to PH, most notably speaking to the complexity that the FDA has introduced into the field as they dealt with the request for a pediatric indication for sildenafil, an issue PHA's Scientific Leadership Council also recently addressed.

But most of all, we heard Diane Ramirez, who has advocated for a better life for all those living with PH  throughout her home state of North Carolina (and beyond), tell her own moving and powerful story of living with PH.  Thank you Diane and thank you Alex Filipse for filming Diane so that it can be shared below.

After Diane spoke, patients and family members from 12 states headed out to talk to our Senators and their staffs.  Here's a picture of part of the group of 20 who visited Maryland Senators Mikulski and Cardin.

This is number 6 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too!


  1. I was honored to be able to attend the luncheon and visit our representatives. I hope to return next year.

  2. I am honored to have had my patient, Ms. Dawn Smith, on Capitol Hill for the last 2 years, lobbying Congress on behalf of PH patients nationally.