Huntington Local

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Fundraiser Saturday for research
into girl's deadly metabolic disease

For the fourth year in a row, the family of Grace Bellontine, an 8-year-old Huntington Station girl with a genetic disease called Sanfilippo Syndrome, is running a fundraiser Saturday to boost awareness and to gather money for research.

The metabolic disorder makes the body unable to properly break down long chains of sugar molecules in the body, according to the National Institutes of Health, which says. “The syndrome causes significant neurological symptoms . . . Most persons with Sanfilippo syndrome live into their teenage years. Some patients live longer, while others with severe forms die at an earlier age.”  There is no cure now.

This year’s fundraiser, held on Pentagon Court behind the library,  is being built around a softball tournament (there are six teams so far), followed by a party.  Admission for those 14 years and older is $30, with those younger getting in for free. There will be a DJ and two live bands, with food, games and raffles.

Grace’s mother, Joan, says they hope to raise $30,000 this year to give to research organizations.  They’ve averaged $18,000 a year for the past three years but have an $8,500 head start this year from a donor, and they are having some success with a healthy eating board game they developed and that was picked up by schools in South Huntington and Deer Park.

Visit www.gracecures.org or call 516-456-7575 for more information.

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