"Tee Time For Tallulah" Fundraiser For 3-Year-Old

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  • A 3-year-old girl has an ongoing condition. Her liver is missing an enzyme. A golf tournament is being held to raise money for Glycogen Storage Disease.

    Tallulah Childers' father is from Leigh, Nebraska. He is in the Air Force, so the family has moved around.

    Tallulah has an inherited disease called, Glycogen Storage Disease (GSD) Type 1B. The disease interferes with the way the body turns food into energy. Due to a missing or impaired enzyme, the body is unable to maintain normal blood sugar levels between meals, leading to low blood sugar (hypoglycemia).

    Tallulah’s blood sugar is checked about 10 times a day. She needs to be fed around the clock to maintain healthy blood sugar levels, typically every 1 to 3 hours during the day and every 3 to 4 hours at night. In order to help her to maintain blood sugar levels, she is fed corn-starch and toddler formula during the day. To date our family has purchased over 400 containers of Argo Cornstarch!

    The University of Florida now has the largest GSD program in the world. Dr. Weinstein’s team treats over 400 patients from 50 states and 14 countries. After more than eight years of work, the dream of bringing gene therapy to humans is almost a reality. A cure is in sight! It is the goal of the entire team to get FDA approval for the human safety trial by 2015. The first trials will be in GSD 1-A individuals, and if gene therapy proves safe and efficacious, the process will be applied to GSD Ib and GSD III.

    However, between $1,500,000 and $2,000,000 are still required to fund the human gene therapy trial that is projected to begin late 2015.

    There are no foundations currently supporting this endeavor. The work that has been done heretofore has been supported by philanthropy and is predominately driven by families with an affected member.

    Tallulah's Nebraska family is holding a golf benefit to raise money for GSD. They appreciate all of your support!

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