BENEFITING: ALSTROM SYNDROME INTERNATIONAL
EVENT DATE: Nov 04, 2012
I'm running the New York City Marathon this year in memory of my niece, Samantha Del Grosso. She passed away in 2008 after battling the effects of Alström Syndrome for the entire 17 years of her life.
According to the Alström Syndrome International website (www.alstrom.org), "Alström Syndrome is a rare hereditary genetic disorder first described by C.H. Alström in Sweden in 1959. We currently have identified nearly 800 individuals with Alström Syndrome in fifty four different countries and maintain an ongoing patient registry. Alström Syndrome can affect people of all nationalities, ethnic groups, and races."
Since Alström Syndrome is so rare, many people haven't even heard about it. And this means funding is extremely limited. My hope is to raise money to help other families affected by Alström Syndrome and thereby keeping the spirit of my niece, Samantha alive in our hearts and minds forever.
**(From alstrom.org) Alström Syndrome International depends entirely upon the support and generosity of individuals, corporations and foundations to fund its many programs and research initiatives. Your tax deductible contribution means so much to the patient community and to the organization whose work is dedicated to their future. On behalf of all those individuals and their families who will benefit from Alström Syndrome research, we thank you very much for your help.