8/11/2001 Muscular Dystrophy, namely Duchenne's !!! =========================================== I am writing to request that you dedicate a show (or just a part of it) to the awareness of an especially lethal form of Muscular Dystrophy; namely, Duchenne's. I doubt Jerry Lewis and MDA know much about this MDA disease, if not, time for others to know... This is the most catastrophic and common lethal genetic disease of childhood. This disease can affect any family. One in 2500 male children will be affected with this disease, 40% of these children are born to families with no recent history of this disease and the incidence is climbing. The Story on Duchenne, it's consequences: A beautiful boy is born, parents' dreams grow for a happy, healthy child and as a toddler, he looks normal. Then, the nightmare begins. He develops progressive muscle weakness, he has difficulty walking and begins falling frequently. By 8-10 years of age he will be wheelchair bound for life or what is left of his life. He loses his independence. By then, Duchenne's Muscular Dystrophy has affected his heart, lungs, stomach and intestines. He needs a ventilator to breathe. He is not able to swallow his own saliva properly. He is unable to defecate properly. He has to be fed and have his bowel movements removed. He will eventually die of pneumonia before the age of 21, even that is long lifetime with this problem. It's important that any kid gets steady care: proper nutrition, attention from birth. First 2 years are important in child's physical, emotional, social developments. The gene that is affected in Duchenne's Muscular Dystrophy, DYSTROPHIN, has been known since 1987 yet still no treatment for this horrible disease exists. It's a protein that helps muscle's tissues repair themselves. Disease is caused by flaws in the gene (missing or defective) that istructs the body how to make this protein. Today we are in a unique position to cure this disease. Medical knowledge and technology are growing at an explosive rate. This could provide us with a cure. Key researchers are developing exiting and promising new projects that could be translated into treatments and a cure. This could drastically alter the course of history and eradicate this disease. With a cure of this disease, vital information will be gleaned that will be indispensable for countless other genetic disease. However, these researchers do not have enough funding to proceed with these projects. Unless funding for research is provided and expedited from the bench to these boys, too many will die before reaching adulthood. I am requesting that you dedicate a show to Duchenne's Muscular Dystrophy, in order to raise awareness of this disease. Increased awareness may lead to better funding and possibly a cure or major improvement in the lives of these boys. Your show can reach countless people. These boys, whose voices dim to whispers as teenagers, deserve to be heard !!! These kids who'll never know much joy, the families that will need our prayers, the sorrows that these folks will bear. Your show can show our way and get the message out to stay. To drug and biotech companies with pockets pretty deep, our children's lives in their hands they keep, Our hearts and souls are true, miracles are due. Support dreams of cure to happen for all the kids now and generations to come. - Thank you & IF YOU AGREE/ACT ON THIS PPROPERLY, GOD BLESS YOU !!! Sincerely, Jan Lubek Nida & The Chicago Muscular Dystrophy Headquarters