glycogen storage disease
zoey
12/09/08
1st Annual Fundraiser for Glycogen Storage Disease Research
delux nightclub, delray beach, florida
My friend, Dave Robinson, has a daughter affected by glycogen storage disease, her name is Zoey.
zoey
From Dave Robinson:
Glycogen Storage Disease is a rare genetic metabolic disorder that occurs when a specific liver enzyme is either missing or not functioning. Children with the disorder are unable to metabolize glucose, which fuels every cell in our body and brain activity. They require 24-hour a day treatment, with constant monitoring for hypoglycemia, a symptom that can cause brain seizure, coma, or even death. Complications including liver and kidney tremors increase with age. A simple cold or flu can spiral into a life threatening situation if not treated properly.
Currently there is no cure for GSD The condition is managed by diet modifications, which is a 24-hour a day, 7 days a week, lifelong endeavor. Poor glucose control can have catastrophic effects. It is not known how many children die of GSD without being properly diagnosed.
We are extremely grateful that there is an organization that is actively trying to support and fund research for a CURE for our daughter’s disease. This a very exciting time for GSD1 research. Scientists, doctors, and researchers are working diligently, not only to find a cure, but also to make daily life for GSD1 patients more manageable along the way. Fortunately, The Children’s Fund for GSD Research has been able to fund many of these studies, and they are beginning to achieve success.
Since its inception in 2002, The Children’s Fund has raised and granted over 4 million dollars. Several of the projects underway have returned very promising results, including gene therapy studies close to finding a cure in GSD dogs. At Zoey’s last evaluation, at Shand’s Hospital in Gainesville , Florida , she was able to hold and pet (and even kiss) these dogs. These dogs were born with GSD just like Zoey, and they are helping to find the cure. But as they get closer to finding that cure, larger medical research projects are required. We need to continue these studies and fund others that will help us reach the ultimate goal-a CURE for our children.
The Children’s Fund for GSD Research is receiving more grant requests than ever before, but without your help, they will have to turn many down. As parents of a 7 year old daughter afflicted with this disease, this frightens us. We hope that one day Zoey will be able to live a normal life that doesn't’t include constant, hourly blood glucose monitoring, hospital stays and excessive medical tests. When The Children’s Fund called out to parents and families asking for support, we knew we needed to do whatever we could. So we’ve planned this event to help raise money so that the ongoing research can continue and the new research will not have to be turned away.
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A big thanks to all the artists and others involved who donated both their time an energy.
