Hours after runners have finished tomorrow’s Cow Harbor race, another group of runners will gather in South Huntington for a 5K run / walk on behalf of a 5-year-old girl with a rare genetic disease.
The “Grace for a Cure” event is named for a young girl named Grace, who has Sanfilippo Syndrome, which interferes with normal cell function in the body, leading to progressive and degenerative effects that usually result in death between the ages of 15 and 20. There is no cure, and tomorrow’s event is designed to raise funds for research.
Grace’s mother, Joan, who asked that the family name not be given, said the event raised $6,000 last year after drawing a crowd of about 150 people, including about 65 runners. This year, she said, they have 200 signed up to run so far.
Registration takes place tomorrow afternoon at 4, with the walk/run starting at 5, at the end of Pentagon Court, just west of the South Huntington Library. Registration is $24 today and $26 tomorrow, which gets you a T-shirt, refreshments and an after-party with a live Rock band, “No Choice.” A member of the band, which is donating its services, is a neighbor of the girl and her family. Outback Steak House is donating their food and time.
The party will also feature face painting, a cotton candy maker, bouncy castle and volley ball. There will also be raffles, as well as prizes for the first- and second-place finishers. The rain date is Sept. 22.
Donations can be made to "Grace for a Cure, Inc." P.O. Box 3011, Huntington Station, NY 11746. For directions and more information, click here or visit the family's Web site, graceforacure.org.
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