Progeria Research Foundation (PRF) is a non-profit organization founded in 1999 by Drs. Leslie Gordon and Scott Berns, the parents of Progeria patient Sam Berns.
Progeria is an accelerated aging disorder due to the accumulation of the protein progerin in cells. Children with the condition often die in their early teens as a result arteriosclerosis, however, these patients tend to have normal cognitive abilities even though their bodies age dramatically.
Before 1999, very little research was being conducted to treat or even understand people with Progeria, however, PRF has been instrumental in finding determining the pathophysiology of this disease as well as being a driving force for drugs that are now in clinical trials.
Below are 3 PRF milestones that can better illustrate the strides it has made on behalf of the estimated 145 children currently living with progeria throughout the world:
PRF Cell & Tissue Bank Distributes over 1,000 Samples
Science can only advance if scientists have the cells and tissues that are essential for their studies. Since its inception, the PRF Cell & Tissue Bank has supplied Progeria basic scientists with over 1,000
cell lines and biological materials, at 135
laboratories in 20
different countries. With the Bank’s precious biological materials readily available, these researchers have led the charge toward future advances in Progeria research, giving the world ever-increasing hope for treatments and a cure.
Image of a progeria cell
PRF Programs Have Supported 100 Progeria Publications
As of July 2017, scientists have published 100
peer-reviewed scientific studies utilizing support from PRF programs such as research grants, cells, tissues, and clinical information. These publications include the full range of breakthrough discoveries, such as testing new potential drugs in the laboratory, new connections between Progeria, heart disease and aging, and clinical trial results that have shown us how Progeria can be treated and someday cured. You can access information on the latest scientific publications on Progeria by clicking here
Handbook Distribution reaches 500 copies
Because Progeria is so rare, most caregivers have never treated a child with Progeria and need expert advice on how to give these children the best possible clinical care. To date, over 500
hard copies of The Progeria Handbook have been distributed to families of children with Progeria and their caregivers. Many more have been downloaded
from the PRF website. From basic health facts to daily care recommendations to extensive treatment guidelines from the world’s leading experts on Progeria, this 100-page handbook helps doctors, school nurses, parents and other caregivers to provide the best possible care for the children.