Our Story

OUR STORY

Why we exist

Prior to 2002, there was virtually no research being done on GSD.

In its first year, the foundation funded 2 grants and research towards a cure began.

OUR STORY

The Children's Fund for GSD Research is a not-for-profit 501(c)(3) foundation established in 2002 when Wendy & David Feldman's son Jonah was diagnosed with GSD1a. After a normal, full-term preganancy, Jonah was born in Saint Raphael's Hospital in New Haven, Ct. Though it was a full-term pregnancy, he had a low birth weight and immediately presented with low blood sugar. After numerous tests, it was discovered that Jonah's body did not have the ability to maintain normal blood sugar levels and that he needed a constant, external source of glucose in order to survive.

At that time there was very little research being conducted on GSD. Cornstarch therapy had been introduced to maintain blood sugar levels, but there was no one looking for a cure. The Feldmans knew something needed to be done. With the help of Dr. David Weinstein, they reached out to the Julius family and the Reed family, whose young children had also been recently diagnosed with GSD1. Together, along with Jonah's aunt, Valerie Rosen, they established The Children's Fund for Glycogen Storage Disease Research. In its first year, the foundation funded 2 grants in the amount of $100,000 and research towards a cure began.

 

Our foundation continues to grow as more families join together with the common goal of curing GSD. We focus on fundraising and spreading awareness, while building a stronger GSD community.

The number of children that have been properly diagnosed has nearly tripled thanks to increased awareness and education as a result of our communications, programs and events.

  • Our Story

    The Children's Fund for GSD Research is a public, not-for-profit 501(c)(3) foundation dedicated to funding GSD1 research.

  • Our Impact

    The Children’s Fund for GSD Research has had a major impact on the GSD community

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" ... because every child deserves to be healthy."

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