Fragile X
As the parent of a child with Fragile X Syndrome, Congressman Gregg Harper understands fully the daily challenges faced by families with special needs children.
FRAGILE X
Fragile X-associated Disorders are genetic – resulting in behavioral, developmental and language disabilities throughout a person’s lifespan. This disorder is linked to a mutation on the X chromosome and is the most commonly inherited form of intellectual disabilities. Fragile X is also linked 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. Further, as many as one in 130 women are estimated to be carriers of the Fragile X mutation according to current studies.
FRAGILE X CAUCUS
As chairman of the bipartisan Fragile X Caucus, Congressman Harper is committed to increasing awareness of this genetic disorder and improving the health of children and adults across the country living with this disorder.
In Fiscal Year 2010, the caucus – in close cooperation with the National Fragile X Foundation – reached many of its targeted objectives. Working with U.S. Sen. Thad Cochran of Mississippi and other members of Congress, the caucus secured funding for a national post-secondary education demonstration program which was authorized in the 2008 "Higher Education Opportunities Act," but was previously not funded. This program will allow young adults with all intellectual disabilities – including Fragile X – the opportunity to enjoy the college experience.
The Fragile X Caucus supported funding for the Center for Disease Control (CDC) to establish public health activities for Fragile X Syndrome. The coalition also obtained report language in support of efforts at the National Institutes of Health (NIH) for the implementation of the NIH Research Plan on Fragile X. Additionally, the Caucus succeeded in adding Fragile X to the list of disorders eligible for medical research projects under the Department of Defense’s (DOD) Peer Reviewed Medical Research Program.
These accomplishments have had a significant impact on the Fragile X community, but this is only the beginning of Fragile X advocates’ promising journey. For Fiscal Year 2011, the Fragile X Caucus 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 funding translational research that shows significant promise of a safe and effective treatment for this disorder.
The Fragile X Caucus also requested that the 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 continued support to grow the National Fragile X Public Health Initiative and the Fragile X Clinical and Research Consortium in order to expand to geographically underserved regions.
In 2012, Congressman Harper successfully included a provision in the bipartisan pharmaceutical user fee agreement extending market exclusivity for innovative drug developments that treat Fragile X Syndrome, Autism Spectrum Disorders and other neurodevelopmental disorders. Recent clinical studies dedicated to medicines for intellectual disabilities have presented promising findings in treatments that target the primary causes of these conditions.
Congressman Harper has relentlessly aimed to streamline federal programs and services intended to be a support to youth with significant disabilities in transition from adolescence to adulthood. With the help of disability advocates from Mississippi and across the country, Congressman Harper seeks to inspire continued success in this area so that special needs children can reach their maximum potential.
