Dear Readers of Angelman Syndrome A to Z,
I want to sincerely thank all the family members and professionals who took time to share their invaluable information, tips, and anecdotes for the 2020 edition of Angelman syndrome A to Z.
As Audrey Angelman once said,
“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.”
Even as an OLD parent of a thirty-eight year-old daughter with Angelman syndrome, it was an exhilarating experience for me to read all of your heartfelt contributions. My family joined the “pioneers” of Angelman syndrome in 1992, and never in our wildest dreams could we have foreseen the astounding strides the ASF has made since then. From funding ten million dollars in phenomenal research projects, to providing a wealth of family support services, to opening AS Clinics across the country, to hosting fifteen family conferences and numerous scientific symposiums, to coordinating annual Walks at nearly fifty sites… The ASF has accomplished all of this and so much more!
As has always been the case, the goal of the 2020 edition of Angelman Syndrome A to Z was to create an all-inclusive document on Angelman syndrome. Naturally, that is a HERCULEAN task! Our latest efforts are only “a tip of the iceberg”! However, I hope you will find Angelman syndrome A to Z to be an invaluable tool. The project’s primary design is to help you find what you are looking for quickly and efficiently.
***Professional information is listed first after each topic. Following that is information provided by the “real experts”… the Angelman family members! Some contributors chose to be anonymous, while others provided additional information in an effort to provide a reference point.
I hope you will benefit, as much as I have, from the wisdom of others in our Angelman syndrome community.
My love to you all,
Alice Evans