Leslie Gordon's son Sam was 22 months old when he was diagnosed with Hutchinson-Gilford Progeria syndrome, a devastating disease in which children age rapidly and usually die between their 7th and 20th birthdays. Gordon, an MD/PhD, and her MD husband, Scott Berns, discovered an astonishing void of information on the disease, which is so rare that it affects only 1 in 4-8 million live births. "There was nothing," says Gordon. "There were no more than 100 publications in total throughout history. There had never been any NIH funding, there were three to four scientists in the world studying it, and there was no active research program."
For lack of existing organizations, they founded their own, the Progeria Research Foundation. They created a cell and tissue bank, and raised enough money to give out fifteen $100,000 research grants to date. A clinical and research database with information on more than 40 ...
