2019 PCORI Annual Meeting Keynote - Making a Difference for Children with Progeria: From Obscurity to Treatment and Beyond
Our Opening Keynote speakers are Scott Berns, MD, MPH, and Leslie Gordon, MD, PhD, accomplished Boston-area pediatricians and researchers. They cofounded the Progeria Research Foundation (PRF) after their son, Sam, was diagnosed with that rare condition. Sam died in 2014, at age 17, although not before he became an online sensation with his TEDx talk, My Philosophy for a Happy Life, and the HBO documentary, Life According to Sam.
Thanks largely to PRF’s support, the gene that causes progeria was isolated and the first treatment developed. Berns, who is PRF’s Board chair, is also CEO of the National Institute for Children’s Health Quality. Gordon, the Foundation’s volunteer medical director, is professor of pediatrics research at Hasbro Children’s Hospital and the Alpert Medical School of Brown University in Providence, Rhode Island, as well as progeria clinical trial investigator at Boston Children’s Hospital and Harvard Medical School.
Session Transcript | Presentation Slides
Scott Berns, MD, MPH
Co-Founder and Chairman of the Board, The Progeria Research Foundation
President and Chief Executive Officer, National Institute for Children's Health Quality
Disseminating Results: Missed SCD Clinic Appointments and the Health Belief Model
Leslie Gordon, MD, PhD
Medical Director, The Progeria Research Foundation
Assistant Professor of Pediatrics (Research), Warren Alpert School of Medicine at Brown University
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