- About Progeria
- About PRF
- Meet the Kids
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With the exception of our staff, everyone involved with PRF is a volunteer! Our Board of Directors, Clerk, Treasurer, committee members, translators, fund-raisers, etc. all devote their time, energy and talents to furthering our mission without pay.
Progeria is a rare and fatal genetic disease of accelerated aging in children. Without the discovery of new treatments, all children with Progeria will die of heart disease at an average age of 13 years. The Progeria Research Foundation (PRF) was founded in 1999 in response to the complete lack of progress being made to help children with Progeria. Our original mission: to discover the cause, treatments and cure for Progeria.* Today, PRF continues to be the only organization in the world solely dedicated to this mission. We have filled a void, taking these children out of the background where they had been for over 100 years and putting them and Progeria at the forefront of scientific efforts.
In just 13 years, we have achieved extraordinary progress towards our mission: the Progeria gene discovery in 2003, first-ever clinical drug trials initiated in 2007, and the 2012 results of that first trial being the discovery of the first treatment for Progeria. In addition, we have achieved extensive global awareness of the disease and PRF's work, and confirmation of critical biological links between Progeria, heart disease and aging we all experience. From an obscure, ignored disease to treatment and global recognition – an unheard of timeline in the world of medical research! Our accomplishments are being praised as a “scientific sprint”** as we forge ahead in this race against time.
All of this progress is due in large part to the creation of PRF's research-related programs and services. Developed with insightful determination, they provide the resources needed not only to advance the field of Progeria, but also to discover what Progeria can tell us about heart disease and aging.
With the support of dedicated staff and volunteers, a talented board of directors, courageous families, and thousands of generous people around the world, we are pushing the field of Progeria forward towards discovery, treatments, and cure. And along the way, we are learning a tremendous amount about ourselves.
Please enjoy the pages of this web site, which details PRF's programs, progress and partners. Most recently, the historic Progeria treatment discovery, tremendous success of our global campaign to identify all children with Progeria, and plans for continued clinical drug trials and drug discovery are contributing to an exciting 2012. All of these initiatives will continue to be strong in 2013, along with the many other activities which have edged us ever-closer to our ultimate goal of a cure.
Your love and support for children with Progeria makes these exciting strides possible.
|Audrey and her nephew Sam
celebrate Night of Wonder 2009
Onward and Upward!
President, Executive Director
*In 2004, in response to the Progeria gene discovery and the growing scientific evidence linking Progeria to the heart disease and aging that affects us all, the mission was revised: To discover treatments and the cure for Progeria and its aging related disorders.
** Most of the time, medical research is like a marathon, but researchers today published the result of a scientific sprint – the first treatment for Progeria, when ten years ago the cause was not known...With an unexpected payoff for the rest of the humanity…for other diseases associated with aging.
- Reporters Robert Siegel and Jon Hamilton, on National Public Radio’s “All Things Considered” airing September 24, 2012, the day PRF announced the discovery of the first-ever treatment for Progeria.