September  15 - 17,  2016

International Rett Syndrome Association

Kathy Hunter founded the International Rett Syndrome Association after her daughter became the first child to be diagnosed with Rett syndrome in the USA in 1983. She led the IRSA for twenty-five years before retiring in 2008.  Other work includes several years in special education, the Board of Directors of the National Organization of Rare Disorders, a Congressional appointment to the National Advisory Neurological Disorder and Stroke Council, an appointment to the Leadership Council of WE MOVE, as well as serving on the Child Neurology Foundation Advocacy Committee and the Rare Diseases Clinical Research Network. Mrs. Hunter testified before the U.S. Congress to increase funding for research on Rett syndrome for more than two decades, whichresulted in allocations of more than $70 million.  Her publications include The Rett Syndrome Handbooks I and II, and Raindrops and Sunshine.   Mrs. Hunter’sdevotion to the Rett syndrome cause is deeply inspired by her daughter, Stacie, now 42, who lives at home and brings continuing love and joy to her family in Maryland, USA.

“It has been an honor and privilege to educate, inform and motivate others to work toward a richer life and a better future for families whose lives are changed forever by the diagnosis of Rett syndrome. At the heart of my commitment is the remarkable reward of coming to know and admire so many other families who demonstrate their extraordinary resilience in the face of adversity, turning tragedy to triumph as they overcome a multitude of daily challenges.  This, of course, is made possible by the incredible courage, strength and determination of the Silent Angels in our lives whose inner voices lighten the burden and brighten our lives with their many blessings.”


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