FRAXA Research Foundation
"Fragile X Syndrome" is the most common genetic cause of mental retardation -- more common than muscular dystrophy or cystic fibrosis, affecting 1 in 4,000 boys and 1 in 6,000 girls of all races and ethnic groups. One in 259 women are carriers of Fragile X. Victims usually also develop behavioral problems -- e.g., extreme anxiety or hyperactivity. Research has been underfunded because the disease is rarely known and has had no effective lobby. Therefore the FRAXA Research Foundation was created in 1994 by parents of three affected children. It has rapidly grown to 27 chapters nationwide, with one full-time staff member. Its main mission is to accelerate research on Fragile X by funding post doctoral fellowships and grants. The Foundation has been instrumental in lobbying the National Institutes of Health to fund $20 million for Fragile X studies, and has itself added another $7.5 million in research grants -- much of it contributed by parents, grandparents and other relatives and friends of affected children. They have been inspired and empowered by seeing how much they could accomplish as a philanthropic team. When a child is diagnosed with a serious disability, parents feel helpless and devastated. FRAXA provides these parents with a support-structure, information and encouragement. It has the potential of helping thousands and thousands of children and families.

|