Pulmonary hypertension is still too often misdiagnosed, misunderstood, and taking the lives of people in the U.S. and around the world.
Silver Spring, Md. (PRWEB) January 29, 2016
Team PHenomenal Hope is taking its fight against pulmonary hypertension (PH) to New Zealand’s Southern Alps as the physician-athlete squad competes in The Pioneer, a seven-day 15,057-meter mountain bike race.
PH, which some people call “the other high blood pressure,” is increased pressure in the blood vessels of the lungs that can lead to death from right heart failure. With symptoms that include shortness of breath, fatigue and chest pain, many people suffering from PH lose valuable time as they are misdiagnosed and treated for other illnesses, such as asthma. Without appropriate treatment, the average length of survival for patients with the incurable, life-threatening disease can be only 2.8 years after diagnosis.
Created two years ago by Dr. Patricia George, a University of Pittsburgh Medical Center (UPMC) PH specialist, Team PHenomenal Hope has raised $91,000 for the Pulmonary Hypertension Association (PHA) disease awareness and research programs. PHA provides patient and caregiver support, medical education and public awareness programs and, since its founding 25 years ago, has provided more than $17 million in PH research commitments. For 12 consecutive years, PHA has received the highest rating - four stars - for fiscal accountability and transparency from Charity Navigator, placing it in the top half of 1 percent of all rated charities.
The New Zealand bike race, which takes place Jan. 31 – Feb. 6, comes as PHA observes its 25th anniversary with a renewed commitment to supporting the PH community while putting its heart into finding a cure.
“Since Team PHenomenal Hope came together two years ago, we’ve been pushing for new horizons in our fight against PH,” Dr. George said. “While PHA tells us our support has helped the association make significant strides over the past two years, we know there is more work to be done. PH is still too often misdiagnosed, misunderstood, and taking the lives of people in the U.S. and around the world. We are excited that adult patients have more treatment options than ever, but there are still no FDA drugs approved to treat children who have PH.”
Team PHenomenal Hope will have two duos in the New Zealand race. Dr. George will partner with Dr. Harrison "Hap" Farber, a Boston University PH specialist. Dr. Kristen Engle, a general surgeon from Pittsburgh, will ride with Thea Kent, an avid mountain biker from Boston.
“Not only do we intend to crush the Southern Alps, but we want to crush our fundraising goal and raise one dollar for every meter climbed,” Dr. George said. “That’s over $15,000 that will support PH research and patient services. We hope to rally people to help make a difference in the lives of those living with this disease.”
Since PHA began in 1991, there have been a number of notable advances, including the growth from zero to 14 FDA-approved PH treatments (for adults), more than those approved for all but two of the 7,000 identified rare diseases. More than two dozen Pulmonary Hypertension Care Centers (PHCCs) have completed PHA’s accreditation process with many more centers undergoing the application and review process. PHA-accredited care centers demonstrate a dedication to making proper diagnosis and a capacity to appropriately and comprehensively manage PH patients through a set of criteria established by PHA’s Scientific Leadership Council. In December 2015, PHA’s new PHCC Board of Directors, made up mostly of PHA Trustees, met for the first time. The centers will provide data for the new PHA Registry, a major advancement in PH care and research.
In November, to broaden public awareness about the disease, PHA launched Heart2CurePH (#Heart2CurePH), a national multi-media public service campaign with the tagline, “At PHA, we’re putting our heart into finding a cure.” The national campaign includes radio and TV public service announcements, print ads, billboards, digital ads and public transit advertising. The association expects nearly 2,000 attendees to help celebrate its 25th anniversary at PHA’s International PH Conference and Scientific Sessions June 17-19 in Dallas this summer.
“PHA, which serves as a model for more than 80 international PH organizations, represents a community of patients, caregivers, healthcare professionals and scientists who are guided by PHA’s mission,” said Rino Aldrighetti, PHA’s president and CEO. “In a little more than two decades, as a team of patients, caregivers, clinicians, researchers, volunteers and generous fundraising groups like Team PHenomenal Hope, PHA has led the way for progress in the areas of patient care, public awareness and PH research.”
About Team PHenomenal Hope
Team PHenomenal Hope, presented by UPMC/Bayer/Actelion, is a nonprofit made up of professionals in the medical and athletic communities. The group uses sporting events as a platform to spread awareness about the disease pulmonary hypertension. Specifically, Team PHenomenal Hope members compete in cycling, running and triathlon outings around the world to raise donations for research, while at the same time educating the public on the greater cause. Since its launch some three years ago, the nonprofit has garnered national attention and support from major sponsors and the pulmonary hypertension community. For more information, including a schedule of events, visit http://www.teamphenomenalhope.org/.
About the Pulmonary Hypertension Association Headquartered in Silver Spring, Md., with a growing list of chapters across the country, the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. Its mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families and medical professionals. Among its programs, PHA facilitates more than 245 support groups around the country and delivers continuing education for medical professionals through PHA Online University. For 12 consecutive years, PHA has received the highest rating — four stars — for fiscal accountability and transparency from Charity Navigator, placing it in the top half of 1 percent of all rated charities. For more information, please go to http://www.PHAssociation.org, @PHAssociation on Twitter or http://www.facebook.com/PulmonaryHypertensionAssociation.