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Fragile X Syndrome: Information
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The National Fragile X Foundation provides information and support, and promotes public awareness and research. They ... have some Spanish language information at their site. For resource centers, parent support groups, and educational information, you can call them at 1-800-688-8765.
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There have been reports that Fragile X patients can still learn and memorize information but need more repetition and stimulation. Also, studies by other researchers had shown that exposing Fragile X knockout mice to a stimulating environment ameliorated behavioral and neuronal abnormalities.
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Fraxa is a foundation that funds Fragile X research. can ... find out information on research, new treatments and testing. Plus has support groups, newsletters, books/products, listserv, and links to other good websites.
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Since having Fragile X does not necessarily shorten one’s life, future planning is important. One thing to consider is a special needs trust. The National Fragile X Foundation’s website has very detailed information provided by a Michigan lawyer about this. It explains how such a trust works, how to choose an attorney (it is important to make sure the attorney you choose understands Social Security, Medicare, Medicaid, and other benefits) and to choose a trustee carefully, since the trustee has discretionary power over how the funds are spent.
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