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This fundraiser ended on 11/05/11

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Our goal is to raise funds for researchers finding a cure for Opsoclonus Myoclonus Syndrome (OMS), a rare childhood neurological disorder.

Every year, 1 in 10,000,000 children are diagnosed with a very rare neurological disorder called Opsoclonus-Myoclonus Syndrome, or OMS. Opsoclonus is defined as an unusual disorder of eye movement. This is where the eyes involuntarily dart around. Myoclonus is defined as short muscle jerks. Ataxia indicates lack of coordination. Currently, only a few doctors are looking into the cause and treatment of OMS. To date, however, there is no known definitive cause, and thus no known decisive cure.

There are a number of things that will bring out the symptoms in a child that has Opsoclonus-Myoclonus Syndrome. You may see the arms, fingers, head, upper body, or eyelids jerk around. When the illness reaches its peak stage, it is often impossible for your child to stand or sit. Anxiety and stress are major factors, and will cause the symptoms to worsen. Treatment is extremely important.

One known cause of Opsoclonus-Myoclonus Syndrome is a neuroblasoma. But this may only appear in 50% of OMS cases. For many others, a neuroblastoma is never found. Tumors are usually found in the chest, but it’s not out of the ordinary to find them in the pelvis or abdomen. You may wonder how a tumor in those areas can cause brain problems, and that’s a good question. Much research has been done, but there are not yet any definitive answers.

One of the challenges with treatment protocols is that each case is unique and requires careful guidance by the doctors. We are trying every day to help spread awareness for this disease and raise funding for OMS research. Please join us in finding a cure for this disease and help us in supporting those doctors doing research for a cure.
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