PHA research and patient-serving programs to benefit from endowments
The PH community’s fight against pulmonary hypertension got a huge boost early in 2007 when PHA received the two largest gifts in the organization’s history. In January, Oracle announced a one million dollar grant to support the ongoing funding of one of PHA’s Mentored Clinical Research Awards. Just one month later, United Therapeutics honored PHA with its second million dollar grant, in support of PHA’s Support Group Leadership Training Institute.
Endowment gifts enable PHA to perpetuate programming by providing a sum of money – by leaving the original gift untouched – that accrues investment income sufficient to fund annual program costs. For PHA, these endowments, and others that may follow, ensure that the PH community’s research and patient support goals remain fully funded until we find a cure. Over time, PHA hopes to endow additional research and program activity with the support of other groups and individuals inspired to bring about significant progress in the fight against pulmonary hypertension.
PH research grant endowed through Oracle Commitment Grant
Oracle Corporation, the world’s largest enterprise software company, was attracted to PHA because of its creative partnerships, including the matching research grant program with the National Heart, Lung, and Blood Institute (NHLBI). The PHA-NHLBI partnership awards fund independent researchers through the Mentored Clinical Scientist Award (K08) and Mentored Patient-Oriented Research Career Development Award (K23). Together, PHA and NHLBI support approximately $812,500 in new pulmonary hypertension research per year. PHA supports 5 five-year grants at any given time. Oracle’s Commitment Grant will endow PHA’s portion of one grant award through its entire cycle and into the next and beyond.
“Oracle is honored to award an Oracle Commitment Grant to the Pulmonary Hypertension Association,” said Rosalie Gann, Oracle’s Director of Global Corporate Citizenship. “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, PHA is making a difference and we present this grant as a statement of our faith in their continuing momentum.”
PHA President Rino Aldrighetti said, “PHA is grateful to Oracle for understanding the role that PHA is playing as pulmonary hypertension rapidly changes into a treatable and — hopefully, someday soon — curable disease. On January 3, 2007, when Oracle committed to the largest single gift PHA had ever received, it opened important new possibilities for the benefit of pulmonary hypertension patients. Oracle is allowing us to endow a grant program of critical importance in the forward march of PH research. The company also set a standard for others to meet. Within 30 days, PHA had received a second grant of $1,000,000 to support our work and new conversations are now developing. Oracle, through this donation, has taken leadership in opening a new doorway in the fight against pulmonary hypertension.”
Support Group Leadership Training Institute endowed by United Therapeutics
In February, United Therapeutics also announced a $1 million endowment gift to PHA. Their generosity will allow PHA to launch a Support Group Leadership Training Institute endowed by United Therapeutics. This program will enhance the capabilities of our current cadre of support group leaders and engage new leaders by providing topic-specific leadership training, teleconferences and web chats, face-to-face training at PHA’s biennial international conferences, and ultimately a fully-realized leadership training institute.
“We are honored to have the opportunity to help train multiple generations of PHA Support Group Leaders,” said Martine Rothblatt, Ph.D., Chairman & CEO of United Therapeutics. “On a personal note, over ten years ago PHA provided my family with our first referrals to PAH specialists and our first exposure to PAH community information. It was from this information that we learned of the unused molecule that ultimately became Remodulin. Hence, I know first-hand that there is no better place to invest resources for PAH than in PHA,” concluded Dr. Rothblatt.
“Serving as a PHA support group leader is rewarding — and challenging,” said PHA support group leader and board member Sally Maddox. “PHA arms us with many wonderful tools to lead our groups, but the chance to learn from each other and get additional training will benefit our groups and all of their members. The creation of the institute will also enable us to recruit new leaders, which is essential to meeting the needs of many more PH patients.”
Endowments solidify PHA’s ability to continue advancing towards a cure
The endowment grants from Oracle and United Therapeutics are the second and third endowments in PHA’s history. The first endowment gift was made by the family of Barbara Smith in 2006 to support patient scholarships for our International Conference. Barbara was a longtime PHA leader and volunteer who lost her daughter and sister to PH before being diagnosed herself. Barbara and her family did much of PHA’s patient support mailing over many years, managed the registration desk at Conference, and helped with many of the quiet tasks that kept PHA afloat before it had a full-time staff.
When Barbara passed away in 2005, her husband Vern approached PHA about what his family could do to help sustain the organization’s mission. Barbara once said, “I think the reason I'm still here is to help other patients.” Through this endowment, her legacy will continue to help patients connect, learn and discover hope at PHA’s International Conferences into the future.
“PHA is extraordinarily grateful for these three endowment gifts,” said Rino. “Each in its own way helps patients and solidifies PHA’s ability to continue advancing towards a cure.”
PHA Board Chair Dr. Mike McGoon concurred: “As a physician who worked in this field when there was very little available, it’s amazing to see what’s happening today. I am so grateful to see the possibilities that are opening up in our common fight against this illness.”
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