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The Children's Fund for GSD Research is a not-for-profit (501c3) foundation, established to benefit children born with Glycogen Storage Disease (GSD1).
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Fight for a Cure

Hard work, focus and discipline are important ingredients for success and critically important for those trying to stay healthy and fit while battling disease. 15 year old Jake was diagnosed with Glycogen Storage Disease and his trainer Jay was recently diagnosed with Type I Diabetes. Watch how they work through their obstacles on the road to a cure.

Help Jake win his fight against GSD. Donate Now!

Living with Glycogen Storage Disease

Hungry For Life!

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Student Science Project Teaches School About Rare Disease

MIAMI (CBS4) – It's not every day that a winning science fair project at an elementary school makes news but in this case, it does. It's because a South Florida elementary school student invented something that taught everyone at his school, including the teachers, something they didn't know about.

When 10-year old Spencer James entered the Howard Drive Elementary School science fair, the first thing he thought of was his 10-month old baby cousin, Jamie.

"It's easier because he could just sleep without being waken up in the middle of the night to be fed," said Spencer. He's talking about his invention. His cousin Jamie has GSD, Glycogen Storage Disease. He's missing the essential enzyme in his liver that creates glucose which fuels the body so he needs constant food. Jamie has to eat every two to three hours so his parents rely on a feeding tube

It's become normal for Jamie's parents, Meri and Grant Gussin, but disrupting his sleep to feed him multiple times a night was a problem and he constantly pulls on his port. That's when Spencer came up with a solution.

He invented a onesie with a pocket so the feeding could take place without disruption.

Jamie's mother said it's really helpful, thoughtful, but most importantly, it's spreading awareness which the Gussins' say is their primary goal.

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