Congress Has Designated July 22 As National Fragile X Awareness Day

Main Category: Autism
Article Date: 23 Jul 2006 - 0:00 PDT

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In the true spirit of bipartisanship, Democratic Vice-Presidential candidate, Senator John Edwards (D-NC) and Republican Senator, Chuck Hagel (R-NE) led the effort, in a year-2000 Congressional proclamation, to declare July 22 as National Fragile X Awareness Day.

Fragile X syndrome is the most common known cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. Symptoms can also include characteristic physical and behavioral features and delays in speech and language development. In addition, it is the most common known single gene cause of autism. Fragile X is also responsible for fragile X-associated tremor ataxia syndrome (FXTAS), in older male carriers, as well as fragile X-related premature ovarian failure (POF) in female carriers. Overall, hundreds of thousands of Americans are impacted by one of the three conditions, and researchers from around the world are actively engaged in studies of this single gene disorder.

The National Fragile X Foundation (NFXF) provides nationwide phone and email informational and referral support, promotes public awareness, develops educational materials and conferences, organizes legislative advocacy in Washington, DC, and funds research geared towards improved treatments and an ultimate cure.

As part of its awareness activities, the National Fragile X Foundation's provides public service announcements for television, featuring well-known television personalities. A PSA featuring Meredith Baxter is currently in nationwide distribution.

Efforts to increase federally-funded research and surveillance programs, at the National Institutes of Health and at the Centers for Disease Control, continue thanks to the efforts of the NFXF, members of Congress and many other individuals and organizations.

The National Fragile X Foundation, in conjunction with its 10th International Fragile X Conference, will hold an Awareness Day Rally & Walk on July 20 starting in Atlanta's Centennial Park. Nearly 1000 family members, scientists and other professionals will hear parent and Weather Channel Storm Tracker, Jim Cantore, share his hopes for increased awareness and scientific breakthroughs. Jim will then lead a walk through downtown Atlanta to the Georgia Aquarium. On July 22, family member and dancer/singer/actress, Jasmine Guy, will help the NFXF promote awareness as master of ceremonies for the conference's closing night banquet.

The National Fragile X Foundation
http://www.fragilex.org