An estimated 235 babies will be born with Adrenoleukodystrophy (ALD) every year in this country alone.
ALD is an X-linked genetic disease affecting 1/17,000 people. ALD destroys the myelin sheath in the brain and affects all neurological functioning: the ability to see, hear, move and eat are taken away leading to a vegetative state and eventually death. ALD usually manifests in boys between the ages of 4 – 10. The disease progresses silently and is often not diagnosed until symptoms begin. Once diagnosed due to physical symptoms it is too late for treatment. Early diagnosis is the KEY to treatment. New York is currently the only state testing for ALD. We need ALD added to the RUSP in order for other states to start testing. A child's life should not be dependent on his zip code.
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