080210xf's Blog

L'X fragile sera vaincu | Fragile X will be conquered


February 14, 2011


WASHINGTON, DC – U.S. Representatives Gregg Harper (R–Miss) and Eliot Engel (D–NY) today announced the reinstatement of the Congressional Fragile X Caucus in the U.S. House of Representatives. The gentlemen will serve as the panel’s top Republican and Democratic members, respectively.

The bipartisan caucus is committed to increasing awareness of Fragile X-associated Disorders and improving the health of children and adults across the country living with this intellectual disability. Fragile X-associated Disorders are genetic – resulting in behavioral, developmental and language disabilities throughout a person’s lifespan.

“As the parent of a 21-year-old son with Fragile X Syndrome, I understand fully the daily challenges faced by families with special needs children,” said Harper. “For our family, Fragile X has become a lifelong labor of love and daily blessings.”

“Fragile X syndrome is perhaps the most common cause of inherited mental impairment,” added Engel. “I am eager to serve as co-chair of this Congressional Caucus, with my friend and colleague Rep. Harper, to bring this issue before the public and strive to enhance public and private abilities to advance our knowledge of this syndrome. The striking rise of autism is reason enough for this Caucus to exist but there are other conditions caused by this genetic disorder and we must do what we can to help the people with Fragile X syndrome and their families.”

For Fiscal Year 2011, the caucus – in close cooperation with the National Fragile X Foundation (NFXF) – reached many of its targeted objectives. The group worked with Members of Congress to push the National Institutes of Health (NIH) Research Plan on Fragile X Syndrome and Associated Disorders and urged Congress to continue providing resources for translational research that shows significant promise of a safe and effective treatment for this disability.

The panel also requested that the Department of Defense (DOD) expand the Peer Reviewed Medical Research Program to include Fragile X-associated Disorders in the eligible research topics for Fiscal Year 2011. Additionally, the Caucus advocated for sustained support to grow the National Fragile X Public Health Initiative and the Fragile X Clinical & Research Consortium in order to expand to geographically underserved regions.

“These accomplishments have had a significant impact on the Fragile X community, but this is only the beginning of Fragile X advocates’ promising journey,” added the chairmen. “We will maintain our efforts to ensure that every youth with a significant disability has the opportunity, encouragement and support to become gainfully employed in an integrated setting, pursue a post-secondary education, and contribute to and meaningfully engage in typical community settings upon leaving high school.”

Fragile X-associated Disorders are linked to a mutation on the X chromosome, and are the most commonly inherited form of intellectual disabilities. Fragile X is also connected to reproductive problems in women – including early menopause and a Parkinson’s-like condition in older male carriers.

Today, over 100,000 Americans live with Fragile X Syndrome and over one-million Americans carry a Fragile X mutation and either have, or are at risk for developing a Fragile X-associated Disorder. As many as one in 130 women are estimated to be carriers of the Fragile X mutation according to current studies.


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