A Note from Alice Evans
Julie Hyman and I created the 1997 and 1999 editions of Angelman Syndrome from A to Z at a time when technology was in its infancy. Our vision was to create a small handbook of tips and information that could be easily accessed by families and professionals. Much of that information is now outdated; however, a few of the tips and anecdotes still hold true today and are included in the 2014 edition.
I want to thank all the family members and professionals who took time to share their wealth of information in this updated, online living document. It is my hope that others will now be inspired to contribute to this project by honoring the words of Audrey Angelman…
“The breaking of that awful feeling of isolation is the greatest gift one Angelman family can give to another…. Those of you who will share your experiences will do it because in the Angelman family that is what we do.”
As the parent of a thirty-three year-old daughter with Angelman Syndrome (Deletion Positive Class 1), it was fascinating and extremely heartening for me to discover and document the enormous strides taken in the last decade of Angelman Syndrome research and development. My family joined the “pioneers” of Angelman Sydrome in 1992, and we certainly never dreamed that so much could be accomplished in such a short time. (Please be sure to visit the topic: Researchers: a Who’s Who of Angelman Syndrome from A to Z to reflect on the astounding work of so many.)
The goal of the current edition of Angelman Syndrome from A to Z was to create an all-inclusive document on Angelman Syndrome. The vision of a “One Stop Shopping” place drove my thinking. Naturally, that proved to be a Herculean task! Therefore, this document includes numerous links to websites, published articles, resources and more. The bulk of the vital information, however, has been included within the topic pages.
I hope that you will find Angelman Syndrome from A to Z to be an invaluable tool to help you find what you are looking for more easily and efficiently. In addition, I hope you will benefit, as I have, from the wisdom of others in our Angelman family.
Please keep in mind that the information/tips provided in “Angelman Syndrome From A to Z” were, for the most part, contributed by family members. This reference material is not meant to be a medical guide or detailed scientific journal, and is not intended to replace medical treatment and/or consultation. Please verify all medical information with your health care professional.
Additionally, the Angelman Syndrome Foundation does not endorse any agencies, products or services listed in this book.