About the Progeria Research Fund

The Progeria Research Fund is a non-profit organization devoted to finding the cure and effective treatment of Progeria and similar disorders. The Progeria Research Fund (PRF) was created in 1999 by Dr. Leslie Gordon and Dr. Scott Burns recently after their son, Sam, was diagnosed with Progeria. After the diagnosis, Sam’s parents discovered that there had been little research, information, or awareness about Progeria. The lack of information and funding for Progeria inspired Sam’s friends and family, and colleagues of Sam’s parents to create the Progeria Research Fund. Today, with the exception of staff, everyone working with the Progeria Research Fund is a volunteer which allows more of the money gathered to go towards research about Progeria.
The administration of the Progeria Research Fund is led by Audrey Gordon, the president and executive of the PRF. Leslie Gordon, a co-founder of the PRF, is the medical director of the PRF. Dr. Gordon oversees the medical research and trials of the PRF. Scott D. Burns, another co-founder, is the chairman of the board of the Progeria Research Fund. The PRF now has seven chapters located throughout the United States. These chapters are led by volunteers, who’s goal is the spread awareness and conduct local fundraising for Progeria.
The overall goal of the PRF is to find a cure to Progeria. The organization does not directly help specific children with Progeria, however, the PRF focuses on research and finding treatment for all children with Progeria. To date, the Program Research Foundation has raised 6,694,209 dollars. This money has gone towards crucial projects, such as PRF Diagnostic Project, PRF Cell and Tissue Bank, and PRF clinical studies.
In 2008, the Progeria Research Fund collected a revenue of $1,210,367. $565,211 came from special events such as galas or volunteer fundraising, $364,376 came from individual giving, and $280,780 came from private foundations. The Progeria Research Fund spent $1,086,583 of the collected money in 2008. The majority of the money, $639,185, went towards research programs such as the Progeria Research Fund Cell & Tissue Bank, Diagnostic Testing, and Clinical Trials for Progeria. $228,250 went towards funding for a research grant, and $75,002 went towards outreach and education for Progeria. The administration of the PRF spent $144,146 in 2008.
The Progeria Research Fund has indeed made great strides in their goal of finding the cure to Progeria. In 2003, the gene which causes Progeria was discovered, and it is clear that the PRF was essential in this discovery. The PRF has also developed a successful diagnostic program, which helps prevent misdiagnosis, which ensures that scientists are not working with improper cells and tissues. A clinical drug trial taking place at the Children’s Hospital in Boston has also occurred due to the PRF’s fundraising. The Progeria Research Foundation has also spread awareness about Progeria, so today it is a much more acknowledged disease. The PRF has also worked on countless other projects, making it a very accomplished organization.
The Progeria Research Foundation works to help a problem which does not affect many, therefore the foundation has not helped tons of people’s lives. However, even if the foundation does not help a large population, its is the most helpful organization for people with Progeria. It is very important that this foundation exists, because if it did not, there would still be no research or awareness for people with Progeria. There may be more pressing issues today than Progeria, however, even small issues must be addressed, and the Progeria Research Fund successfully does this.