Finding a Cure for Glycogen Storage Disease Ia

Date
Saturday, June 11, 2011

Time
8:30am (meet at the ticket booth)

Location
U.S. National Whitewater Center
5000 Whitewater Center Parkway
Charlotte, NC  28214
Directions

A Letter From Christopher Chapman

My name is Christopher Chapman, and I'm eleven years old and in the fifth grade.  Would you believe that:

• I have never tasted sugar?
• I cannot eat candy?
• I have never tasted fruit or had a drink of milk?

That’s because I have Glycogen Storage Disease Ia.

Unfortunately, people with Glycogen Storage Disease Ia cannot properly release stored sugar when their blood sugar starts to drop. The only treatment for my disease is to feed me liquid cornstarch through a tube every four hours around the clock. My parents have been doing this since I was diagnosed at eight months of age. Having GSD Ia makes it very difficult to maintain normal blood sugar levels, and there can be many complications in the short and long term. Kids like me affected with GSD Ia often have enlarged livers and the disease can also cause tumors in the kidney and liver, coma and even death. My GSD is managed through a rigorous diet and will be a lifelong endeavor for my family and me. You might say I have a thing for challenges! Now I am taking on a new one, and I would like you to join me.

Currently, there is no cure for Glycogen Storage Disease, and very few researchers are working on one. Fortunately, Dr. Dwight Koeberl at Duke Children’s Hospital & Health Center is leading the effort to find a cure through gene therapy. You can learn more about his research by reading the article, Gene Therapy Could Save Kids From a Lifetime of Eating Cornstarch. One of the main barriers to progress is the lack of funding due to the rarity of this disease. That means there is minimal support from the government for research and no support from the usual sources such as large pharmaceutical companies.

My mom and others have worked hard on fundraising, but not nearly enough money has been raised. I’d like to help in this effort.  On Saturday, June 11, I plan to challenge my body and test my ability to experience the outdoors and survive a day at the U.S. National Whitewater Center. My goal is to:

• Ride my mountain bike (3.5 miles)
• Rock climb a wall (46 feet)
• Fly on a mega zip (1,123 feet)
• Climb 32-ft to zip (100 feet)
• Free fall off the mega jump from a 46 foot tower
• Cross high ropes and bridges on an aerial obstacle course
• Traverse a canyon
• And, finally, ride the whitewater raft

All in one day!

Would you be willing to sponsor me on Saturday, June 11 when I challenge my body and test my ability to experience the outdoors and survive a day at the US National Whitewater Center?

Our goal is to raise $10,000.00 to help fund Dr. Koeberl’s research.  For every dollar you donate my Aunt Michelle and Uncle John will match it dollar for dollar.

I have already challenged Dr. Koeberl to join me, and he has accepted my invitation. Do you want to take the challenge? If so, please join me for a day of adventure, fun, and and an amazing opportunity to help a worthwhile cause.

If you can’t join me on the course, you can support me by sponsoring my efforts--just click here to make your gift online.

Gifts can also be sent directly to:

Ken Baroff
Duke Children's Hospital & Health Center
Office of Development
512 South Mangum Street, Suite 400
Durham, NC 27701

Checks should be made payable to Duke Children's and include For The Love of Christopher Fund #: 391-2519 in the memo line.

Thanks for considering joining in my effort to find a cure for Glycogen Storage Disease Ia.

Warmest regards,

Christopher Chapman

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Photo Gallery 2011

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