Cohasset Family Starts Campaign To Raise Awareness Of Rare Diseases

By Debbi Kim, WBZ-TV

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.

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