March 26, 2007
FOR IMMEDIATE RELEASE
Contact: Dayle Kern
Pulmonary Hypertension Association
Phone: 301-565-3004 x113
Fax: 301-565-3994
Email: Dayle@PHAssociation.org
Website: www.PHAssociation.org
Hope Grows a National Rare Disease Community
Silver Spring, MD – The Pulmonary Hypertension Association (PHA), a patient-founded nonprofit organization dedicated to supporting those whose lives are affected by pulmonary hypertension, received its first million dollar gift this year and was pleased to receive a second million dollar gift almost immediately following.
The first million dollar endowment came from Oracle Corporation, the world’s largest enterprise software company, to support ongoing funding of one of PHA’s Mentored Clinical Research Awards. These awards are granted in partnership with the National Heart, Lung and Blood Institute and Oracle’s gift to PHA is a noteworthy step towards a larger endowment to fund research in the pulmonary hypertension field.
Oracle’s Director of Global Corporate Citizenship, Rosalie Gann, says, “Within the rare disease community, PHA has been creative and effective in leveraging funds to support what is increasingly being recognized as a treatable illness. Through its combination of leading medical professionals, patients and family members, they are making a difference and we present this grant as a statement of our faith in their continuing momentum.”
The second endowment was granted by United Therapeutics to create a Support Group Leadership Training Institute. With PHA’s connections to over 140 support groups, this gift is a noteworthy step towards providing continuous support to this rare disease community. United Therapeutics focuses on developing products for patients with chronic and life-threatening cardiovascular, cancer and infectious diseases. Chairman and CEO, Martine Rothblatt, Ph.D. says, “We are honored to have the opportunity to help train multiple generations of PHA Support Group Leaders… I know first-hand that there is no better place to invest resources for PH than in PHA.” United Therapeutics manufactures Remodulin, one of the six FDA-approved therapies for pulmonary hypertension.
In 1985, at the close of a five-year study by the National Heart Lung and Blood Institute, a total of 187 pulmonary hypertension patients were identified in the U.S. There were no treatments at that time. Only fifty percent of PH patients, typically women in their child-bearing years, were expected to survive 2.8 years from diagnosis.
It was in this desolate environment that the Pulmonary Hypertension Association was founded in 1990 by three patients and a family member. The organization’s most rapid period of growth has been during the past eight years. In this period, the organization has grown from 1,000 members and supporters to 7,500 members and an additional 26,000 supporters and friends. Its annual budget has similarly increased from $137,000 to over $5 million. Five treatments are now available and five more are in clinical trials. Medical interest in diagnosis has increased, with an estimated 20,000 to 30,000 patients now receiving treatment. PHA has provided support and education to this community of patients, caregivers, and medical professionals by producing materials such as the 280-page patient survival guide, a medical journal, and a website that receives 220,000 hits per month.
The two million-dollar endowment grants are the second and third endowments in PHA’s history. The first was established as a legacy for an active participant and organizer at PHA’s International Conferences. Rino Aldrighetti, PHA’s president and CEO, says, “PHA is extraordinarily grateful for these three endowment gifts. Each in its own way helps patients and solidifies PHA’s ability to continue advancing towards a cure.”
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