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MISSION: To Discover Treatments and the Cure for Hutchinson-Gilford Progeria Syndrome and its Aging-related Disorders
PRF BY THE NUMBERS as of June 30, 2014
- Identified children living with Progeria: 118* in 41 countries
- PRF-sponsored Progeria Clinical Drug Trials: 3
- Grants funded: 55, totaling over $5.5 million
- Cell lines in the PRF Cell & Tissue Bank: 193
- Children in PRF’s Medical & Research Database: 127
- International Scientific Meetings on Progeria: 11
- Number of languages into which PRF’s program and medical care materials are translated: 26
- Increase in scientific publications since the Progeria gene discovery: 2,000%
*Includes 24 children in the Progeroid Laminopathy category that 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 affects millions of normal 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 the parents of a child with Progeria, Drs. Leslie Gordon and Scott Berns, and 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 that 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 June 2014: $17,737,441
85% of PRF’s annual expenses are consistently dedicated to its programs and services.
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 discoveries are teaching us about the heart disease and the aging that affects us all.
WHO’S WHO AT PRF?
Audrey Gordon, Esq., President and Executive Director, Co-Founder
Working closely with the Board of Directors, officers, staff and volunteers, Ms. Gordon is responsible for ensuring The Progeria Research Foundation's financial growth, program development, and day-to-day management.
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 Deputy Medical Director and Senior Vice President of Chapter Programs at the March of Dimes.
Tina, Brandon, Brittany and Zach Pickard, PRF’s Ambassador Family
The family of 5-year-old Zach lives in Lexington, Kentucky, and is an integral part of PRF’s efforts to raise public awareness, involve other families in our programs, and raise funds for research. We appreciate the time and effort they devote to these important activities.