In April 2008 our lives were changed forever. Our youngest son Dale, who was six at the time, was diagnosed with Duchenne.
Duchenne is a progressive muscle disease that robs boys of the use of their muscles and strength and eventually their lives. Dale will be in a wheelchair by 11 or 12 years of age. Since our hearts and lungs are muscles too these boys will suffer cardiac and respiratory failure. Boys with Duchenne rarely live past their late teens or early twenties. There is presently no cure for Duchenne. Current treatments are long term and can have difficult, unpleasant and crippling side effects. Duchenne is 100% fatal.
No one should know the pain of listening to the dreams of their child knowing that they will never come true. We cannot sit by idly and watch our baby die a slow and agonizing death. We can’t let this happen! We are committed to stopping this disease from taking his body.
We need your help to save Dale’s life and the lives of the 20,000 more boys that are diagnosed with Duchenne each year. We are in a race against time. These boys get weaker each day. Dale has already lost his ability to run, jump and play like his peers. Our goal is to stop this dreaded disease before it kills our child.
Duchenne research is extremely under funded. Only 5 cents of every dollar collected by MDA goes to Duchenne, even then only a portion of that 5 cents goes to research. There are several promising studies that are taking place right now and many more that are awaiting funds to begin their research. Please help us fund these studies. It takes years to go from the research phase through the FDA approval process. We have to get all of these projects started if we are going to have time to save this generation of boys.
Rick and Lelia Ginder
The Gainesville Community Foundation
5214 SW 91 Drive, Suite A
Gainesville, Fl 32608
Phone: (352) 367-0060
Fax: (352) 378-1718