Rett Syndrome Awareness Month
Sunday October 22, 2006
Mary Kugler, the About.com Guide to Rare and Orphan Diseases, just alerted me to Rett Syndrome Awareness Month. Rett Syndrome is a part of the autism spectrum -- and, unlike autism, which strikes mostly boys, Rett Syndrome strikes mostly girls. Here's how Mary introduces the topic:
Forty years ago, when my cousin was an infant, no one could tell her parents why she couldn't sit up by herself at age 6 months. (They were told the child had cerebral palsy.) As my cousin grew older, she began screaming instead of talking, hitting her hands together, and had difficulty moving her body. Rett syndrome was a relatively unknown disorder until the mid-1980s, and it was then that my cousin finally was correctly diagnosed. This was my first encounter with this neurological disorder which occurs mainly in females.Learn more about Rett Syndrome -- or share your experiences with this disorder!
Comments
The Rett Syndrome Handbook Second Edition is now available for ordering. The 620 page book is the ultimate resource for parents and professioals alike. The first edition was translated into 8 foreign languages. The book is an excellent resource for anyone who has a special needs child in their life. Order from www.rettsyndrome.org today!
My daughter, Stacie, was the first child diagnosed with Rett syndrome in the USA back in 1984 when she was ten years old. We had no information and nowhere to turn. My solution was to create the International Rett Syndrome Association and to promote awareness so we could work toward the cure. Today, Stacie is 33 years old, and still lives happily at home with us. We have lobbied for more than $70 million in research funds and directly funded almost $4 million. The Rett Syndrome Handbook was a true life’s work — the compilation of more than 30 years of living and loving someone with Rett syndrome. The 608 page book covers every aspect from diagnosis and daily care to adult resources. It has been praised by doctors as an excellent resource, and by families as a lifesaver.
What month is Rett Syndrome Awareness month? We have a 3 year old daughter that has been diagnosed and we are establishing numerous fundraisers to help the cause to find a cure.
Thanks