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Duchenne is a form of Muscular Dystrophy. It is a progressive muscle disease that robs boys of the use of their muscles and eventually their lives. Dale progressed from walking to needing a wheelchair at around 12. Since our hearts and lungs are muscles these boys typically suffer cardiac or respiratory failure at a young age. Dale has already been diagnosed with scar tissue on his heart. There is presently no cure for Duchenne. The only current treatment involves steroids, which Dale is on, that have 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. Day by day we watch our son dying, little by little this disease takes more and more of Dale’s abilities. Dale like other boys lose the use of their lower body first, then as the disease progresses their upper body. Dale is at the point now where it takes both his hands to lift his arm to eat. He can no longer wave bye when Lelia or I are going somewhere. We are committed to stopping this disease from taking him from us.
We need your help to save Dale’s like and the lives of the 20,000 other boys diagnosed with Duchenne each year. We are in a race against time. Our boys get weaker every day.
Duchenne research is extremely underfunded. There are several promising studies that are taking place right now and many more waiting on funds to begin their research. Please help us fund these studies. It takes years to go from research through the FDA approval process. We have to get these studies started if we are going to save this generation of boys.
Sincerely, Rick and Lelia Ginder