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MISSION: To Discover Treatments and the Cure for Hutchinson-Gilford Progeria Syndrome and its Aging-related Disorders, Including Heart Disease
PRF BY THE NUMBERS as of December 31, 2016
- Identified children living with Progeria: 144* in 46 countries
- PRF-sponsored Progeria Clinical Drug Trials: 4
- Grants funded:68, totaling $7.1 million
- Cell lines in the PRF Cell & Tissue Bank: 205
- Children in PRF’s Medical & Research Database: 152
- International Scientific Meetings on Progeria: 11
- Number of languages into which PRF’s program and medical care materials are translated: 37
- Increase in scientific publications since the Progeria gene discovery: 2,234%
*Includes 33 children in the Progeroid Laminopathy category who have a mutation in the Lamin pathway, but do not produce progerin.
Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS), is a rare, fatal genetic condition of accelerated aging in children. Children with Progeria die of the same heart disease that affects millions of normally aging adults (arteriosclerosis), but at an average age of just 14 years. Remarkably, their intellect is unaffected, and despite significant physical changes in their young bodies, these extraordinary children are intelligent, courageous, and full of life.
The Progeria Research Foundation (PRF) was established in 1999 by Drs. Leslie Gordon and Scott Berns, the parents of a child with Progeria, along with many dedicated friends and family who saw the need for a medical research resource for the doctors, patients, and families of those with Progeria. Since that time, PRF has been the driving force behind the Progeria gene discovery and the first-ever Progeria drug treatment. PRF has developed programs and services to aid those affected by Progeria and the scientists who conduct Progeria research. Today, PRF is the only non-profit organization solely dedicated to finding treatments and the cure for Progeria. PRF is hailed as a prime example of a successful translational research organization, moving from creation, to gene discovery, to first-ever drug treatment in just 13 years.
Total Dollars Raised
1999 through December 31, 2016: $24,781,948
More than 80% of PRF’s annual expenses are consistently dedicated to its programs and services - one factor in our achieving a coveted 4-star rating from Charity Navigator.
The support we have received made the Progeria gene discovery, the Progeria clinical trials and all of our other extraordinary progress possible. With the help of current and new supporters, we will win this race against time and find treatments and the cure for these special children. Moreover, Progeria treatment discoveries may also help millions with heart disease and the entire aging population.
WHO’S WHO AT PRF?
Meryl Fink, Esq., President and Executive Director
Working closely with the Board of Directors, officers, staff and volunteers, Ms. Fink is responsible for day-to-day management and for ensuring The Progeria Research Foundation's financial growth and program development.
Leslie B. Gordon, MD, PhD, Medical Director, Co-Founder
Dr. Gordon co-founded PRF with friends and family after her son, Sam, was diagnosed with Progeria. Dr. Gordon oversees PRF’s research-related programs, and is a co-chair for the Progeria clinical drug trials. She is an Associate Professor of Pediatrics Research at the Warren Alpert Medical School of Brown University and Hasbro Children’s Hospital in Providence, RI, and a Staff Scientist at Boston Children’s Hospital and Harvard Medical School.
Scott D. Berns, MD, MPH, FAAP, PRF Chairman of the Board, Co-Founder
Dr. Berns, Sam’s father, is a co-founder of The Progeria Research Foundation and serves as Chairman of the Board. He is a Board Certified Pediatrician and Clinical Professor of Pediatrics at the Alpert Medical School of Brown University. He is also President and CEO of the National Institute for Children’s Health Quality, an independent, nonprofit organization working to improve children’s health.
Audrey Gordon, Esq., Director of Donor Development, Co-Founder
Ms. Gordon is working closely with the Executive Director, Board of Directors, relevant Board committees, and PRF staff on setting and implementing PRF’s long-term fundraising plan to increase PRF’s visibility and generate a diversified, increased and sustainable income.
Meghan Waldron, PRF’s Youth Ambassador
Meghan serves as a spokesperson for PRF, from the perspective of a youth with Progeria. Accomplished cellist and violinist, high school cross country and track team athlete, published poet – Meghan is a talented and busy 15-year-old living in Massachusetts.