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Singer Kevin Black, Rett Syndrome Families Ask CongressFor Increased Research Funding

Posted on: Wednesday, 29 March 2006, 12:00 CST

WASHINGTON, March 29 /U.S. Newswire/ -- Parents and children with Rett syndrome, including country music artist Kevin Black (brother of Clint Black), made the rounds on Capitol Hill today to lobby their representatives and testify before Congress about the urgent need for more research on this debilitating neurological disorder that affects young girls between the ages of six and eighteen months. The International Rett Syndrome Association (IRSA) is asking Congress for critical funding for research on Rett syndrome and related disorders in the FY2007 budget.

Kevin Black, whose daughter, Cortney, lost her 16-year battle with Rett syndrome in 2003, testified in front of the House Appropriations Labor, Health and Human Services, and Education Subcommittee today. "As a parent who has lost a precious child to Rett syndrome, I can think of nothing more important than investing in research to build upon the amazing progress we've made toward finding a cure," said Black. "It's too late for Cortney. But for thousands of other kids who live with Rett syndrome, we need to keep searching for answers. The only way we get there is through research and public awareness. I believe some day we will have a cure. Until then, I will do whatever I can to persuade public officials and private donors to dedicate investment dollars to solving this medical puzzle."

Rep. Steny Hoyer (D-Md.) gave his support to this issue as well. "In a short time, we have gained great knowledge in our understanding of Rett syndrome, and we have made significant progress in our pursuit of learning how to treat and, perhaps, prevent Rett syndrome in the near future," stated Hoyer. "We must not lose this critical momentum, and I will continue to advocate for research funding to ensure this development continues and look forward to future important discoveries."

Today's congressional hearing marked IRSA's annual visit to Washington. After the discovery in 1999 of MECP2, the Rett syndrome gene, there was a flurry of excitement among researchers who have since also found the Rett gene in a wide variety of other late- onset disorders from autism and mental retardation to schizophrenia and bipolar disorder.

"The discovery of this gene was a major breakthrough," stated Dr. Alan Percy, M.D., Director of the Rett Center for Excellence at the University of Alabama at Birmingham. "By identifying the source for this disorder, we can tailor our research; its potential for the future is unimaginable."

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Background on IRSA

The International Rett Syndrome Association (IRSA), founded in 1984, is the world's oldest and most comprehensive non-profit organization dedicated to providing thorough and accurate information about Rett syndrome, offering informational and educational family support, and stimulating research aimed at finding the cause of Rett syndrome and methods for its prevention, control and cure. For more information please visit http:// www.rettsyndrome.org , or call 800-818-RETT for more information.

http://www.usnewswire.com

Source: U.S. Newswire

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