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
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...