The Progeria Research Foundation: Finding a Cure for Progeria

The Progeria Research Foundation (PRF) is the only organization in the world solely dedicated to discovering the cause, treatments, and cure for Hutchinson-Gilford progeria syndrome, commonly referred to as a premature aging syndrome or simply progeria. Progeria is a rare and fatal genetic disease of accelerated aging in children. Few kids with progeria live past the age of 13. PRF's mission is to find treatments and the cure for this disease and its aging-related disorders.

In 1998, Drs. Leslie Gordon and Scott Berns' only son, Sam, was diagnosed with progeria at 22 months old. They immediately started to collect as much as information as they could on the disease, but quickly learned that there was an enormous lack of medical data and resources dedicated to progeria. They also realized that there was no place for these children to go for medical help, no place for families and doctors to consult for information, and no source of funding for professionals who wanted to do progeria research. So together with friends and colleagues, Gordon and Berns launched the Progeria Research Foundation in 1999.

Since then, hundreds of devoted volunteers have joined the cause. With the exception of the PRF staff, everyone involved is a volunteer. PRF's board of directors, board of advisors, clerk, treasurer, corporate officers, committee members, lawyers, accountants, translators, fundraisers, graphic designers, and public relations reps all contribute their time, energy, and talents without pay to ensure more is spent on raising awareness and finding a cure for progeria.

Since its inception, the Progeria Research Foundation has discovered the progeria gene in 2003, conducted the first-ever clinical drug trials in 2007, raised extensive global awareness for progeria, and confirmed critical biological links between progeria, heart disease, and aging, among other accomplishments. PRF has taken progeria and the children it affects from the background and placed them at the forefront of scientific efforts and in the global spotlight.