Silver Spring, MD (PRWEB) May 08, 2014
Pulmonary Hypertension Association (PHA) founders, and sisters, Pat Paton and Judy Simpson will be featured at the National Organization for Rare Disorders’ (NORD) Portraits of Courage Gala tonight in Washington, D.C. NORD will be featuring 20 people living with rare diseases who display great courage in their experiences with very challenging diseases.
“Your sister and you embody that spirit, and we believe that sends a message of hope and inspiration to others,” NORD’s message to Pat Paton said.
In 1987 when Pat was diagnosed with pulmonary hypertension (PH), only 187 patients had been identified in the U.S. through a NIH registry and there were no treatments. Pat was given the standard advice at the time: to get her affairs in order because she would live only another 6 weeks to 6 months.
Pat and Judy didn't give up. Pat entered a clinical trial for the first treatment for PH, and she and Judy spent two years searching for another patient. In January 1991, in Pat’s dining room, they and two others founded what would become the Pulmonary Hypertension Association, a patient association that has grown to include two medical associations, a robust medical education program and journal and over 240 support groups around the country. Both Pat and Judy continue to be active as emeritus members of PHA’s Board of Trustees.
“There are now an estimated 30,000 patients with PH in the U.S. Because of Pat and Judy and those who followed, these patients have somewhere to go for support, education and a way to fight back against this devastating disease,” says PHA President Rino Aldrighetti. “The unique collaboration they developed between patients and the medical community has led to 12 PH-specific treatments and more in the pipeline.”
NORD also awarded the Pulmonary Hypertension Association the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.
About the Pulmonary Hypertension Association
PHA, headquartered in Silver Spring, Md., is the country's leading pulmonary hypertension organization. PHA is unique in its approach of connecting the entire PH community of patients, families and medical professionals. Its mission is to find ways to prevent and cure pulmonary hypertension and provide hope for the community through support, education, research, advocacy and awareness. PHA provides free access to information on its website about pulmonary hypertension, facilitates over 240 support groups around the nation, and delivers continuing education for medical professionals. To learn more about PHA, visit: http://www.PHAssociation.org.