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Understanding Rett Syndrome by
Rett Syndrome is a severe neurological disorder whose cause is presently unknown. It leads to a variety of problems, often involving mental retardation, serious motor handicaps, epileptic seizures, and difficulties with communication. This syndrome is found only in girls, and it usually becomes noticeable during their second year of life. The disorder is estimated to occur in one out of every 10,000 female births worldwide, but as the characteristics of the problem are becoming more widely known, new cases are being reported at an increasing rate. This is the first book on Rett Syndrome. The attempt here is to explain the problem and the implications for the individuals involved, their parents, teachers, and others who work with them. Because there is no cure yet, medical science presently has little help to offer the families involved, although research is proceeding vigorously. Many practical insights and techniques are offered for those working with this problem.
Publication Date: 1997-08-01
Resources & Support
International Rett Syndrome Foundation (IRSF)
An organization that funds research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services.
Family Voices of New York
Provides information and resources to families of children and youth with special health care needs (CYSHCN) and the professionals who work with them through individual information and referrals, parent matching, conferences and sharing of materials including care notebooks and resource guides.
Parent to Parent of New York State
Parent to Parent of NYS connects and supports the families of individuals with special needs by:
- connecting them, one-on-one, with trained Support Parents who have "been there before" as caregiver to a child with similar needs
- providing information & referrals
- providing trainings on a variety of topics in person, online, or by webinar
Books for Kids
This book is an adaptation of a poem written by the author when he was 16 years old. He was inspired by his sister Shauna, who was born with Rhett's Syndrome. Unable to speak or walk on her own, the gift of Shauna's life and her family's love for her continues to encourage and bless many.
Publication Date: 2015-01-10
UR Medicine | Golisano Children's Hospital
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Phone: (585) 275-7710