Kathy Hunter

Kathy Hunter founded the International Rett Syndrome Association following the diagnosis of her then ten year-old daughter, Stacie, in the spring of 1984. After working several years in special education, she was honored to serve two terms on the National Board of Directors of the National Organization of Rare Disorders (NORD). She accepted a Congressional appointment to the National Advisory Neurological Disorder and Stroke Council (NANDS), and appointment to the Leadership Council of WE MOVE, representing national, regional and international patient advocacy organizations and foundations.

Kathy has received several honors including selection as one of the Maxwell House 100 Real Heroes and she was featured by Family Circle Magazine in their Women Who Make a Difference series in 1996. Under Kathy’s leadership, IRSA was honored to receive the First Annual Advocacy Group Award of Merit from the Child Neurology Foundation in 2001.

She was selected as a Baltimore Business Journal Health Care Pioneer in 2003. Kathy’s work has been featured in a number of national newspapers and magazines. She has authored several publications on Rett syndrome, including Share the Journey, Bridges, Raindrops and Sunshine, and The Rett Syndrome Handbook, Edition One, which was translated to seven different languages.