Angelman Announcements – October 2014

ANGELMAN CARTOON

This cartoon targets children from 5 to 8 y.o. who live around a child with Angelman SyndromE (family or schools…), but adults can enjoy it too !
This cartoon movie narrates the story of a relationship which happens between Paco and Maël, who has this rare genetic disorder. How should people react to persons who are different ? What feelings does such an encounter arouse ? This cartoon asks questions, and aims to give an opportunity to typical children to speak about their experience with disability. To this end, it begins to bring a response by showing an inclusive model.
You can watch it on Youtube by putting the ENGLISH SUBTITLES in the lower right corner of the window. CLICK ON THE PICTURE TO OPEN YOUTUBE

Maels

 

 

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The Foundation for Angelman Syndrome Therapeutics is excited to announce the addition of Dr. Matthew During to our list of distinguished speakers at the 2014 FAST Summit & Gala in Chicago on December 5-6, 2014.  On Friday morning, December 5, 2014, from 9:00 AM – 10:00 AM, Dr. During will be discussing our joint efforts to bring a small molecule compound to clinical trial for the treatment of symptoms of Angelman syndrome. Read More

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Awesome Articles in the latest edition of Angelman Today – September/October

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Chili Mom Fights For Better Accommodations For Daughter’s Service Dog

A Chili Mother has been in a battle with her daughter’s school district for two years, with no end in sight yet. She wants better accommodations for her daughter’s service dog in the classroom.

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Rousing silenced X chromosome may treat Rett syndrome

“This could be a small-molecule approach for treating X-linked disorders,” says Benjamin Philpot, professor of neuroscience at the University of North Carolina at Chapel Hill, who is leading the work on Angelman syndrome but was not involved in the new .

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A Page of Ink – Tattoos for our kids whose lives are touched by Angelman Syndrome – those with us and those who have gone before click on the image for a larger picture The Angelman Ink Coll…

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Questions for Lawrence Reiter: Extracting clues from teeth

Studying brain disorders has never been easy. Apart from postmortem brain tissue, a rare resource with some limitations, most options rely on trying to grow neurons in a dish.

In the past few years, researchers have tried taking skin or hair cells from individuals with a particular disorder and coaxing the cells to become neurons.

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Teenager creates superhero to raise awareness of genetic condition

A Congleton sixth former has created a superhero to raise awareness of a rare genetic condition, Angelman Syndrome.

Facebook.com/angelmansyndawareness Twitter.com/@AngelSyndAware

 

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***Sensory Tip of the Day!***
Children with sensory processing deficits often under-register pain and temperature, sometimes to the extreme of not being able to detect the pain of a broken bone or the temperature of a hot burner on the stove. This must be taken seriously, with safety guidelines in place for those caring for your child. I have created a handout to print or download and share with your child’s teacher, daycare provider, other family members, etc. ~Angie Voss, OTR
http://asensorylife.com/pain-and-temperature-safety.html

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VIDEO

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Adult AS webinar

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About humphriesnz

Live in Christchurch New Zealand with my family, Catholic, interested in music historic Fiction, Angelman Syndrome Awareness
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