The KDA Story
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Every few days a baby boy is born with this DNA defect
The defect is in the ‘X’ Chromosome and it makes testosterone almost a poison to his body. Since there is no treatment or cure for this defect, he will grow up not knowing when the disease will begin to attack his motor neurons and muscles. Often it begins with painful cramping and uncontrollable muscle spasms. Over time it will attack most of his muscles often making it difficult to even swallow liquids.
Since the disease is very rare, it will often be misdiagnosed as Amyotrophic Lateral Sclerosis or ALS. As the disease progresses, the motor neurons will begin to die and the muscles will waste away. Eventually, he will most likely require a wheelchair to move around and possibly even a neck brace to hold his head up. Many will be forced into early retirement and almost every one of them will worry about the financial welfare of his family. Pneumonia will become as feared to him as any disease because of his inability to clear the lungs of phlegm. And, if he becomes a father, he will live with the knowledge and often, the feeling of guilt, that his daughters are carriers of this defect and will pass it on to future generations of his family.
The disease is Spinal Bulbar Muscular Atrophy; more commonly known as Kennedy's Disease. Every day small groups of dedicated researchers around the world are trying to find a treatment and cure for this disease. Unfortunately, funding for research of rare diseases like Kennedy's Disease has been drastically cut over the last few years. That is why we need your help.
We are the Kennedy's Disease Association. We are a California corporation recognized under the United States Internal Revenue Code 501(c)3 as a publicly supported non-profit organization. Our purpose is to educate others about this rare disease and to support further research. Ninety percent (90%) of every dollar donated goes towards Kennedy's Disease research and education.