“Research kicks the door down and lets patients walk through it,” says Debbie Drell, formerly of the Pulmonary Hypertension Association—a member of the ATS Public Advisory Roundtable.
PAR is an innovative partnership between the ATS and lung disease nonprofits. Together, they shape public policy, stimulate research, and advocate for patients.
The Pulmonary Hypertension Association—a longstanding PAR member—provides patient and family support services, research funding, medical education, and advocacy and awareness programs.
As senior director of volunteer services for PHA, Debbie was well-positioned to raise awareness about what ATS does for people living with lung disease.
“Patients want to know: How does ATS help physicians advance research? How does ATS help you breathe? How do they help you live your best life?” says Debbie, adding, “PAR helps answer these questions.”
Debbie’s dedication to the pulmonary hypertension cause is driven by her close relationship to her sister Alex, for whom she is the primary caregiver. When Alex was first diagnosed in the 1990s, neither their family nor friends had heard of PH. Only one FDA-approved treatment was available then—today, there are 14.
Debbie is awed by the progress in treatment of this disease while acknowledging there is still much more to do.
The Pulmonary Hypertension Association is a generous partner of the ATS Foundation Research Program, co-funding research grants for young investigators in PH. This partnership has resulted in 17 PH researchers receiving grants since the program’s founding.
“For a rare disease, that’s life changing for many people,” notes Debbie. “And with the Research Program’s return on investment of $13 [in subsequent federal funding] for every dollar donated, that’s huge. But what does that mean for the human outcome? This keeps my sister alive.”
Building a future where patients breathe better