30 YEARS OF PHA
30 YEARS OF PHA
Left: Dr. Jim White and Tyler Garigen.
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im White, M.D., Ph.D., is passionate about the work he does with the Pulmonary Hypertension Association (PHA) to improve and extend the lives of people with pulmonary hypertension (PH). “The patient-centric focus … means that everything we do has to be clearly connected to patients – whether we are planning communitybuilding activities, disease education for patients, materials to raise awareness among health care providers, or research,” says Dr. White, PH program director at the University of Rochester, a PHAaccredited PH Care Center in New York. “There is an enormous range of things PHA does, but the leadership at all levels makes sure every PHA activity will clearly benefit the patients afflicted by this awful disease.” Dr. White is among the many health care professionals, families, caregivers and people with PH who support PHA’s mission. He became involved in PHA after meeting Raymond Benza, M.D., and Victor Tapson M.D., at a conference. Since then, Dr. White has served on the editorial board for Advances in Pulmonary Hypertension, PHA’s scientific journal, and he has presented at the past six PHA International PH Conference and Scientific Sessions. He also is a member of PHA’s Scientific Leadership Council. Like Dr. White, Fran Rogers, M.S.N., CRNP, found PHA’s focus on patients appealing, which motivated her to volunteer for the organization. “PHA is an outstanding organization devoted to finding a cure for PH,” says Fran, PH clinical coordinator at Temple University Hospital’s PHAaccredited PH Care Center. “Meeting the needs of patients and caregivers is central to PHA’s mission.” Fran, immediate past chair of PHA’s PH Professional Network Executive Committee and a
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PATHLIGHT // ISSUE 1
Right: Isla Grey. Bottom: Fran Rogers, Dr. Anjali Vaidya, Lori Warren and Pat Sampson.
‘PHA is an outstanding organization devoted to finding a cure for PH. Meeting the needs of patients and caregivers is central to PHA’s mission.’ – Fran Rogers
former member of PHA’s Board of Trustees, also makes annual contributions to the organization. Each year since 2016, she leads Team Temple Health, a fundraising team for the Philadelphia O2breathe Walk. “As a health care provider, I see the impact of donations firsthand,” Fran says. “PHA has helped so many of our patients and families, and I share those stories with all potential donors.” Similarly, Dr. White and his wife, Dr. April Luehmann, have been PHA donors for 15 years. Dr. White also participates in his local fundraising event, the PHight for Life Walk and Fundraiser. “The best part about PHA is the community building, which is core to every PHA activity,” he says. “[PHA programs] bring the community together – patients, researchers, health care providers and caregivers – to celebrate, grieve, educate, empower, excite and laugh in hopes for a better tomorrow.” That’s particularly true for Jennifer and Joe Morrow, who see a brighter future for their daughter Isla than they did four years ago. At the time, the family thought then 3-year-old Isla probably wouldn’t reach school age or attend school. Doctors found PH when Isla was undergoing surgery to correct a heart murmur.
‘[PHA programs] bring the community together ... to celebrate, grieve, educate, empower, excite and laugh in hopes for a better tomorrow.’ – Jim White
As the Morrows researched PH in the hospital waiting room, they knew their lives had changed forever. “Seeing the word ‘fatal’ was heartbreaking,” Jennifer says. At a recent doctor visit, Jennifer and Joe heard “teenager” for the first time. They credit Isla’s doctors, research and PH awareness for Isla’s brighter outlook. And the family is “100% committed” to further raising awareness by contributing to PHA.
PHA’s commitment to funding research makes possible the kind of advancements that have helped patients like Isla. Dr. White cites “a bumper crop of brand-new ideas” that could make treatment simpler and more effective. “One of our key goals … is to invest in especially talented and exciting young people – hoping that they will get bitten by the PH fever and focus their professional efforts on PH for the next 30 to 40 years.”
Help continue PHA’s patient-centered focus. As a nonprofit organization, PHA relies on donations and grants from people, companies, foundations, and civic organizations to provide services, patient support and research funding. To bolster PHA’s mission, visit PHAssociation.org/ donate.
PHASSOCIATION.ORG
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