Parents share tips and anecdotes

Angelman Syndrome A to Z

Angelman A to Z is a resource for parents, caregivers, doctors, therapists, teachers and anyone involved in the care of a person with AS. The information comes from tips, anecdotes and discoveries from your experiences. Thank you to all who contributed to the 4th and latest edition!

Angelman A to Z is created by Alice Evans, mother to 38 year-old Whitney, who is Del+, class 1. 

Thank you to Alice for her passion and dedication to the Angelman A to Z project and the Angelman syndrome community!

Alice Evans and Family

Angelman A to Z: 2020 Edition

A  B  C  D  E  F  G  H  I  J  K  L  M  N  O  P  Q  R  S  T  U  V  W  X  Y  Z 

See the complete list of topics

Disclaimer

Please keep in mind that many of the ideas/tips contributed by family members in Angelman Syndrome A to Z are merely suggestions and may not be effective for your angel or family. 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.

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