Southeastern Rett Syndrome Alliance

FOR IMMEDIATE RELEASE:
June 27, 2007
CONTACT: Chuck Curley
781-762-2240

International Rett Syndrome Association and Rett Syndrome Research Foundation Complete Merger Combined Operations of Leading Rett Syndrome Organizations Will Lead to Enhanced
Research, Treatment and Advocacy Programs (Cincinnati, Ohio – June 27, 2007) – The International Rett Syndrome Association (IRSA) and the Rett Syndrome Research Foundation (RSRF), the world’s two leading Rett syndrome organizations, announced today that all approvals necessary to effectuate their merger have been obtained. The merger, approved unanimously by both boards of directors and by over 99% of the voting members, will be effective on June 30, 2007. The combined entity, known as The International Rett Syndrome Foundation (IRSF), will continue to focus on research, family services and advocacy related to the treatment and cure of Rett syndrome.

“Today marks the beginning of a new era in the search for a cure and treatments of Rett syndrome and related disorders,” said Kathryn Kissam, Chairman of the board of IRSF. “A unified Rett syndrome community is better prepared to help advance the science and serve the families affected by Rett syndrome.”

Chuck Curley will be the Executive Director of IRSF. “The combined entity will build upon the success of both organizations,” said Curley. “We look forward to expanded cutting-edge research programs and innovative family services. I am confident that together we can accelerate the search for treatments and a cure while advocating for the needs of affected individuals and families.”

About Rett Syndrome Rett syndrome is a neurological disorder which predominately impacts girls. While there are nearly 4,000 known cases of Rett syndrome in the United States, the disorder is genetically linked to more widespread neurological disorders such as autism, mental retardation and schizophrenia. Rett symptoms begin to manifest between the first six to eighteen months of life and eventually incapacitate the affected children so they cannot survive without constant care. The disorder causes seizures, respiratory and gastrointestinal abnormalities, and a variety of muscular and motor impairments.

About 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. The Association has members in all 50 states and 72 foreign countries. For more information please visit www.rettsyndrome.org, or call 1-800-818-RETT.

About RSRF
The Rett Syndrome Research Foundation was founded in late 1999 by a passionate group of parents who were committed to funding research aimed at finding treatments and a cure for Rett syndrome. Today RSRF is the world’s leading private funder of Rett research. In the last five years RSRF has funded 104 projects at premiere institutions totaling over $11 million. The foundation has proven to be fiscally responsible by directing 97% of each dollar donated directly to program services and was awarded Charity Navigator’s prestigious 4-Star rating. For more information please visit www.rsrf.org, or call 1-513-874-3020.