Team PHenomenal Hope Members Help Kick Off 2015 PHPN Symposium

Team PHenomenal Hope members Dr. Patricia George and Anne-Marie Alderson were keynote speakers at the 2015 PHPN Symposium Opening Dinner on the evening of Thursday, Sept. 17. They spoke about how they have taken competitive bike racing to the next level by using it as an opportunity to raise PH awareness. And they also spoke about the importance of teamwork, partnership and preparing for unexpected obstacles. These were themes that very easily translate to the healthcare professionals who made up the audience.

 

Watch a short clip of their speech.

Over the last few years, Team PHenomenal Hope has played a major role in raising funds and awareness for pulmonary hypertension – and the ultra-endurance team shows no sign of slowing down anytime soon. If team members aren’t racing, they’re training and preparing for the next race while also heavily promoting the PH cause.

Just last month, Dr. George, a pulmonologist at University of Pittsburgh Medical Center (UPMC), took her bike across the Atlantic and competed in the Paris-Brest-Paris bike race - a 764-mile roundtrip course from Paris, France, to Brest, France, and then back to Paris.

When Team PH formed several years ago, they were partly inspired by Dr. Robert Frantz; Jessica Lazar, PA; and Dr. Raymond Benza and the trio's 2010 trek up Mt. Kilimanjaro to raise funds and awareness of PH. Team PH decided to do similar awareness and fund raising when they took on the Race Across America (RAAM) in 2014. RAAM, which is a 3,000-mile bike race from Oceanside, Calif., to Annapolis, Md., is longer than the Tour De France and considered to be one of the toughest bike races in the world. Dr. George and Alderson, along with their two teammates Ryanne “Ryo” Palermo and Stacie Truszkowski, two back-up racers, and countless crew members, succeeded in completing the race in seven days, seven hours and 15 minutes.

Once the momentum began, Team PH could not stop with just one race. They have grown into a team of both men and women competing in endurance events across the country and around the world. This past June, Dr. George and Alderson took on the Race Across the West. This shorter, but still very challenging race, took the two from Oceanside, Calif., to Durango, Colo.

PHPN Takes the PH Cause to Congress on Advocacy Day

On Thursday, Sept. 17, 90 healthcare professionals representing 27 states visited Capitol Hill to advocate on behalf of PH patients and request support for the Pulmonary Hypertension Research and Diagnosis Act, as part of the 2015 PHPN Symposium. First, the group had the opportunity to meet the sponsors of the bill, Rep. Kevin Brady [R-TX] and Rep. Lois Capps [D-CA].

PH Professional Network members met in small groups with Members of Congress to share stories about PH patients’ experiences and to ask for co-sponsorship of our bill. The PH bill calls for the creation of a committee within the federal government focused on giving people living with PH longer, better lives.

One attendee put it simply. “For me, the best part of the event was learning more and advocating on behalf of patients.”

By the end of the day, nearly 100 congressional offices knew more about pulmonary hypertension. And, in the days following the visits, four representatives, Rep. Jaime Herrera Beutler [R-WA], Rep. Mike Coffman [R-CO], Rep. Tim Ryan [D-OH] and Rep. Chris Stewart [R-UT] signed on as cosponsors.

All members of the PH community -- doctors, healthcare professionals, patients, family and friends -- can help advance the PH bill. Get started on PHA’s Advocacy Action Center or contact Angelia DiGuiseppe, PHA’s Grassroots Campaigns Associate, at 301-565-3004 x753 or AngeliaD@PHAssociation.org.