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Cohasset Family Starts Campaign To Raise Awareness Of Rare Diseases By Debbi Kim, WBZ-TV February 22, 2011 4:53 PM COHASSET (CBS) - A Cohasset family is launching an on-line campaign hoping to raise awareness and research money for rare diseases. Eight-year-old Bobby Allen suffers from a genetic disorder called Glut1 DS. It stops glucose from getting to the brain and can cause seizure and other disabilities. So Allen has to eat a special diet and be monitored regularly by doctors. "I can't eat cake. I can't eat cupcakes. I can't eat any carbs or sugar," he explains. Bobby's mother Michele teamed up with a friend to start a charity to help raise money for Glut1 research. "The experts have determined Glut1 is curable," she said. "It's just a matter of getting the proper funding and going to the next level to find a proper cure." The Allens and other families are holding a special event at the statehouse Monday, February 28 to help highlight rare diseases like Bobby's. Find more information about the event and the Allen's fundraising campaign, on their website. This story originally appeared at http://boston.cbslocal.com/2011/02/22/cohasset-family-starts-campaign-to-raise-awareness-of-rare-diseases/ |
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