EVENTS & MILESTONES
2015 Tour for the Cure Fundraising Event
Cohasset Family Starts Campaign To Raise Awareness Of Rare Diseases
CBSBoston.com, February 22, 2015
"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. More...
Kin seek to shed light on rare disease
Boston Herald, February 22, 2015
"Meet Bobby Allen. In so many ways, he's a typical 8-year-old boy. He likes gym, loves skiing and dreams of having a loyal pet dog to call his own.
"But each morning for breakfast, instead of brand-name cereal or home-cooked waffles, he drinks a canola oil cocktail with a side of calcium. Bobby has glucose transporter deficiency syndrome, or Glut1 DS, a very rare disease that prohibits glucose from getting to the brain.
"And because glucose is the main source of fuel for the brain, Glut1 DS sufferers have seizures - unless they follow a strict high-fat, no-carb ketogenic diet - and suffer mental and physical disabilities. More...
Campaign underway for Glut1 DS cure
Wicked Local Cohasset, February 18, 2015
"This month a lot of people with a little money are joining together to make a big difference. Until the end of February, Cohasset-based charity Milestones for Children is spreading the work about its cause and its goal - a cure for a rare disease called Glut1 DS, a brain energy metabolic disorder. In partnership with Rare Disease Day, February 28, Milestones for Children founders, Shelly Allen and Muffy Antico, initiated a 21-day campaign asking people to donate $21. Allen's son, Bobby, 8, lives with Glut1 DS. More...
3rd Annual Glut1DS Conference
July 15, 2015
Hampton New Orleans Convention Center
1201 Convention Center Blvd
New Orleans, Louisiana
For more information visit www.Glut1ds.org
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Cohasset mothers focused on finding a cure for a rare disease
Wicked Local Cohasset, September 9, 2010
"If you hear the phrase, "the fight for a cure," it could refer to any one of thousands of fundraising efforts happening right now to support medical research to find cures for innumerable diseases. Each one of the efforts has a story behind it and a story to tell. Each one is in a different stage in its pursuit for the ultimate goal - a cure. More...
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