Angelman Syndrome is the result of an abnormality of the 15th chromosome. Individuals with Angelman have global developmental delay and cognitive disabilities. They are usually behaviorally unique with generally happy personalities. Most individuals with Angelman will experience seizures; most achieve control of these seizures with medication. “Angels” rarely develop any speech so the people around them must learn to listen in new ways to what these individuals have to say. Most individuals with Angelman will learn to walk but usually have balance and movement disorders. Individuals with Angelman Syndrome can expect a normal lifespan. With strong supports, individuals with Angelman can live surrounded by friends and loved ones, engaged in meaningful activities, and sharing their unique perspective on life with all those around them.
What genetic testing should be done? Genetic Testing for Angelman Syndrome 101, on the F.A.S.T. website.
**Foundation for Angelman Syndrome Therapeutics **
Angleman Syndrome Listserve
Click on the Angelman Syndrome Listserve link above for instructions on how to join the e-mail listeserver for families or caregivers of children with Angleman Syndrome. This list has been a tremendous blessing to me! The other families on the list are living in your shoes, they know what you go through on a daily basis, they share your hopes and your fears, and they have lots of wisdom from experience! If you are a newly diagnosed family or a family that has not known of the listserve until now, PLEASE join and introduce yourself, I feel certain that you will be welcomed with open arms! I also advise you set up a brand new e-mail account, just for subscribing to this listserve! Then you can go and read at your leisure, and not have to clog up your regular e-mail. Some days can be heavy on the listserve!
NEW! Comprhensive AS Genetics Information
To visit websites/blogs by our Angel friends click to your right under blogroll. They are such fun to read!
The Angelman Syndrome Forum is also a wealth of information. It's another place for parents or caregivers of children with AS to go for help and support. What is cool about this forum is that, unlike the listserve, all topics are archived and searchable so someone with a new diagnosis has a lot of information readily available to them! This forum was started by a dad, John Hannaford, in memory of his own sweet girl Alyssa, who had Angelman Syndrome and died at the early age of fourteen. Be sure and read Who is Alyssa Hannaford?. It is a beautiful tribute to Alyssa!
Another cool site with Angelman information: Michigan Chapter of Angelman Syndrome
Angelman Syndrome; A Parent's Brochure For Parents
*LOVELY brochures for using to educate people around you on Angelman Syndrome, in a way that's very personal for your family! Joshua's is pictured on the site, they are just GORGEOUS! I LOVE having these to hand out, when people ask me about Joshua, or they want to know more about Angelman Syndrome. People LOVE them too! I have had so much positive feedback about them. Darren Humphries, an AS dad, designs them, and really puts his heart into them.
South Texas Angels: The Angel Karly Foundation
Family walks to boost awareness of Angelman syndrome
Couple to hold yard sale in support of their daughter
A "Long Shot" Pays Off
Angelman Syndrome Walkathon
People and Places | On a horse, they’re easy riders
A Wiki for Angelman Syndrome
Lil' Angel Gifts raises awareness on both coasts
Bone Mineral Density in Angelman Syndrome
OUR HAPPY LITTLE ANGEL (about Colin Ferrell's son James)
Introduction to Microboards
Katy Is Going to Camp With the Ravens as Their Little Cheerleader
My quest for truth about son's condition
Imprinting and assisted reproductive technology (pdf file)
Study Finds Laughter Is Truly Contagious
Families Raise Awareness About Angelman Syndrome
Friends, family rally for 'smiling' boy
Augmentative Communication News: Angelman Syndrome
Specific Changes in the Brain Associated With Sleep Deprivation Described in New Study
I Will Share and Be a Friend: an article written by Erin Sheldon, the infamous Maggie's mom. Erin wrote a great article about her and Maggie's adventure in creating a pro-actively inclusive Girl Guides unit. The article appears on the front page of the latest Community Living Kingston newsletter.
Levetiracetam in Nonconvulsive Status Epilepticus in a Child With Angelman Syndrome by Peter Weber MD
From Maggie's Family Website: "Children with Angelman syndrome have an increased risk of developing a nonconvulsive status epilepticus. Although the urgency to treat nonconvulsive status epilepticus depends on the underlying illness, most clinicians and authors agree that treatment should be focused to rapidly terminate this condition. Until now, the use of levetiracetam to treat nonconvulsive status epilepticus in children is based only on some case reports. Our case further supports this treatment regime for a subgroup of children with a special risk of nonconvulsive status epilepticus and developmental delay."
Genetic engineering cures mice of brain disorder *NEW
Insights for autism from Angelman syndrome