AS Resources
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KayserBetten beds and how they can provide a safe night’s sleep for you and your Angel.
The KayserBetten bed is one of the most highly recommended beds by parents of children with Angelman Syndrome. This bed will meet your child’s medical, safety and behavior needs. One comment we keep hearing from parents is how well THEY sleep at night knowing their child is safe in their room. The beds are spacious, call and find out the right size for your child. The KayserBetten bed may be eligible through your insurance provider. For more info call 1-800-574 ext. 308 www.KayserBettenUS.com If you have a KayserBetten bed and would like to share your story with us, it could be featured in the next edition of Angelman Today. Email…
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Adaptive Clothing Line by Tommy Hilfiger
Check out the latest line of adaptive clothing to hit the Runway! SHOP OUR NEW KIDS ADAPTIVE CLOTHING COLLECTION! Tommy Hilfiger Adaptive Line on Amazon
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The Low Glycemic Index Treatment for Angelman Syndrome and Prader-Willi Syndrome
By Sybille Kraft BellamyMother of Maxent, AS 14 years old. Thirteen years ago in July 2003 Maxent was diagnosed with Angelman syndrome (AS), he was 18 months old. Today he is a handsome teenager in excellent physical condition with no medical issues. Nevertheless, this was not always the case. From infancy to his toddler age he was chronically sick and he spent more time in the hospital than at home. Very quickly I had the certitude that diet should be the best accessible and fastest way to help him. Following my own observation and encouraged by Max’s pediatrician (and later by our neurologist), I started paying attention to his diet…
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KayserBetten – Secure Sleep System
Sleep is so important for our Angels and parents. Here is a great resource when sleep and safety are at the top of your list. The KayserBetten Secure Sleep System is used by many Angelman Families. Available in the US and Canada. www.KayserBettenUS.com
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Trick or Treat – I may not speak…
For those with complex communication needs it is important to participate in activities with their peers. This Halloween we wanted to share these FREE cards and stickers to help make things easier. When Trick or Treating this year, your child can hand the cards to the person at the door or wear the adhesive badge on their costume. Download and Print for FREE! Share with your friends! We used Avery Adhesive Flexible Name Badges. Easily order from Amazon.com and get delivered to your door. Download the Avery adhesive labels here: Avery Adhesive label 8 per sheet-Angelman Syndrome Avery Adhesive label 8 per sheet-Autism Download the cards here: Trick-or-Treat Cards…
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FIND – Further Inform Neurogenetic Disorders
The Cerebra Centre for Neurodevelopmental Disorders is led by Professor Chris Oliver at the University of Birmingham. The aim of the Centre is to conduct high quality research with children and adults with neurodevelopmental disorders. The Centre focuses on researching behaviour, cognition and emotions. The Cerebra Centre team has developed a novel online resource to improve the exchange of knowledge about rare genetic syndromes. The purpose of this website is to summarise research studies using a range of interactive and engaging formats, for example, parent stories, professional talking heads, bite-sized written information and an interactive database. The website is called FIND, which stands for ‘Further Inform Neurogenetic Disorders’ and has…
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Angelman House – Quebec, Canada
By Charles de Broin Société du syndrome d’Angelman The idea of offering a respite home for Angelman children was first conceived by Paolo Di Vito, Sophie Dubé and a handful of parents and friends who were willing to dedicate time and energy to the cause. The idea was to offer a safe and welcome home away from home to children with Angelman Syndrome. The Foundation du Syndrome d’Angelman ( angelman.ca ) obtained its letters patent in May of 2005 creating a non profit corporation for people touched by Angelman Syndrome, to promote research on the syndrome, to offer a stimulating environment for individuals afflicted with the syndrome and provide support to those nearest to…
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The Fourth International Symposium For Diet Therapies
Matthew’s Friend’s Symposium – Liverpool UK 2014 By Sybille Kraft Bellamy A couple of weeks ago I had the opportunity to attend one of my favorite scientific symposiums: The 4th Global Symposium Ketogenic Dietary therapies for Epilepsy and other Neurological disorders. Over 27 countries were present sending the most eminent neurologists, researchers scientists in epilepsy, cancer, molecular biology and nutrition. They presented their clinical trials and laboratory results in the field of the Ketogenic diet. Angelman syndrome was represented by Dr. Elizabeth Thiele the neurologist from Mass General hospital in Boston who received the John Freeman award from Nancy Abraham (Co-founder of The Charlie Foundation) for her outstanding work in the…
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Angelman Anecdotes – Community Project by Alice Evans
Angelman Anecdotes “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. Whatever problems you have to meet, others not only understand but have found a solution. Whatever road you have traveled, others have traveled before you, so there is no need to travel alone.” Audrey Angelman Audrey and Harry Angelman, Orlando 1993 Whitney and Ashleigh (Sorenson) Evans Family Members: Let’s honor Audrey’s words by making a family section titled, Angelman Anecdotes (of an updated version of Angelman Syndrome from…
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Government Benefits and Angelman Syndrome
By Eric W. Wright, Ed. D. Families often struggle to find the appropriate resources when it comes to meeting the needs of individuals with Angelman Syndrome. I remember nearly six years ago when my wife and I were contemplating selling our house because we were so confused on how we were going to care for our daughter and address our daughters needs related to mobility. Part of me was worried about how we would pay for medication, therapy, diet, and preschool. When the dust of the new diagnoses settled, we started on our path to find resources. This would be a piece of cake, considering my work as a Family…
