Monday, May 31, 2010

From Mountains to Rivers...

From climbing Mt. Kilimanjaro to swimming the Mississipi, people whose lives are touched by PH continue to find amazing ways to help fight against this disease. They are our heroes.

Lil Long' s best friend Nicky Roberts died of PH in 2007.  Lil says they did everything together and now on Sept 4, 2010, the day after the third anniversary of Nicky's death, Lil - who was diagnosed with PH herself shortly after Nicky's death - will swim the Mississippi in her friend's memory.  Both women had been event planners and Lil Long will be using her swim to raisie funds for PHA.  You can help, too.

Here's Lil's interview on WXVT Delta News...

A Quick Lesson in Persistence

When Elisabeth Williams, who works with PHA's grass roots advocacy and awareness efforts, told me the story of what Dick Turnsall had accomplished in working with his member of Congress, I thought it carried a great message on what one person, sticking with it, can accomplish.  Thanks Dick for what you've taught us and Elisabeth for sharing his story in your guest blog.

If you want to know something about what a little persistence and initiative can get you, Dick Tunstall, one of PHA’s 435 Campaign members can fill you in. As a member of the 435 Campaign the last three years, Dick contacted his Members of Congress about pulmonary hypertension (PH) through letters and visits. Last year, Dick set his sights on getting Representative Himes (D-CT) to cosign H.R. 1030 the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009.

The road began in July 2009, when Dick started working with Representative Himes’ staff to schedule a visit with Mr. Himes in his Washington D.C. office. After several months of back and forth, which included Dick inviting Representative Himes to his Support Group meeting, Dick met with Himes in October 2009. The meeting was very successful--Representative Himes expressed interest in co-sponsoring H.R. 1030!

But the story doesn’t end there. By early March 2010, Tunstall was disappointed to find out that Representative Himes had still not signed onto H.R. 1030. Instead of giving up, Tunstall, persisted and followed up with Mr. Himes office again. The result of all of that hard work? As of May 24, 2010, Representative Jim Himes (D-CT) is officially listed as a co-sponsor on H.R. 1030.

Good work Dick—indeed, persistence does pay off!

Find out how you can help with the PH Research and Education Act  in the House (H.R. 1030) and in the Senate (S. 2803).  Click on Read About This Bill at the top or bottom of each page to find out whether your Member of Congress or Senators are co-sponsoring the PH Bill..  Learn more how you can  connect with your own Member of Congress through the 435 Campaign