Rett Syndrome Organizations Partner With National Institutes Of Health To Fund Research For Childhood Neurological Disorder

WASHINGTON, Dec. 14 /PRNewswire/ -- IRSA and RSRF, organizations dedicated to Rett syndrome treatments and cures, today announced a new partnership with NIH to stimulate research by increasing funding for this rare neurological disorder that mainly strikes young females.

The move supports the National Institutes of Health's (NIH) Roadmap to the Future initiative, which seeks to prioritize and bolster medical research in the United States. "The partnership between IRSA, RSRF and the NIH underscores a central tenet of the NIH Roadmap. We're sharing the NIH commitment to private/public partnerships that can enhance and escalate discoveries beneficial to the understanding, treatment and cure of Rett syndrome," said Kathy Hunter, parent, founder and president of IRSA.

The partnership is expected to fund grants that will lead up to $5 million in additional research funding, significantly adding to the amount currently available through private organizations. Three NIH Institutes, the National Institute of Neurological Disorders and Stroke (NINDS), the National Institute for Childhood Health and Human Development (NICHD) and the National Institute of Mental Health (NIMH), are participating in this partnership.

"NIH has enjoyed a long and productive history of partnering with non- profit organizations," said Story C. Landis, Ph.D., Director of the NINDS. "Agreements such as this initiative with IRSA and RSRF take our relationship one step further and therefore represents a new approach to advancing research for the benefit of patients."

Rett syndrome research also has been championed by Congressman Steny Hoyer (D-MD) who has rallied Congress to include the disorder as a priority for NIH study. "I applaud this new partnership between IRSA, RSRF and the NIH; a collaboration that will help bring leading experts together to work on this unique and puzzling neurological disorder that affects one in every 10,000 girls," said Congressman Hoyer. "I will continue to advocate for federal research funding so that we may continue making advancements in combating this disorder."

Over the past year, some scientists who study the gene involved in Rett syndrome, called MECP2, and its protein have become convinced that understanding Rett syndrome will unlock answers to many other neurological conditions such as autism, bipolar disorder, and schizophrenia, for which genetic components are suspected but not yet identified.

"Rett syndrome could be the key to understanding many neurological diseases," said Duane Alexander, M.D., Director of the National Institute of Child Health and Human Development. "Research on Rett syndrome may not only benefit people who have the disorder, but also may lead to new insights into other developmental conditions."

This partnership also represents the first collaboration between IRSA and RSRF, the two principal groups in the U.S. responsible for private funding of Rett syndrome research.

"This partnership will bring much needed research dollars into the hands of scientists. We are confident that this infusion of resources will help accelerate the translation of basic research discoveries to clinical applications with tangible benefits for individuals struggling with Rett Syndrome," said Craig Robertson, Executive Director for RSRF.

While Rett syndrome is a rare disorder it is genetically linked to more widespread disorders such as autism and schizophrenia. Rett syndrome symptoms begin to manifest between the first six to eighteen months of life and eventually incapacitate afflicted children so that they cannot survive without constant care. The disorder causes seizures, respiratory and gastrointestinal abnormalities, and a multitude of muscular and motor impairments.

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. To learn more about IRSA and their Circle of Angels Research Fund for Rett syndrome, go to or call IRSA at 1-800-818-RETT.

RSRF, a non-profit organization founded in 1999, is dedicated exclusively to accelerating Rett syndrome research. Since its inception, RSRF has funded over $6.5 million in research and is the world's number one private funder of Rett syndrome research. To find out more about RSRF and Rett syndrome, please go to or contact RSRF at 513.874.3020.

International Rett Syndrome Association

CONTACT: Lisa Forman, Ph.D. of International Rett Syndrome Association,+1-301-856-3334, or Monica Coenraads of Rett Syndrome Research Foundation,+1-203-445-9233

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