Congress Has Designated July 22 As National Fragile X Awareness Day

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

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