Angelman Announcements – May 2014

‘Grandma Brown’ creates dolls for children

The second doll is headed overseas to England for a child with Angelman syndrome, a neuro-genetic disorder characterized by severe intellectual and developmental disability.n

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Remembering Patty Oneppo

Many Have known Patty Smith Oneppo her husband Don and son Clint (AS)  and have followed her fight with multiple myeloma over recent years. Sadly, Patty passed away on the 15th of May This video has been made by Tami Mugler to celebrate and remember Patty.

http://youtu.be/C82oqoy1zvY

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Neuroscientist shares insights on learning and memory at TEDx TampaBay

Dr Ed Weeber Speaks at TEDX

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ASSERT, the Angelman syndrome UK charity, interviews Godzilla director and patron, Gareth Edwards.

https://www.youtube.com/watch?v=ZsFaZXdP-C0

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Andrea Millette Photography has shared more photos on this link from the ASF Walk in Cincinnati.

CincinnatiGroup_2014_02

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Angelman Syndrome Community Cookbook

We have collected recipes from families and friends of individuals with Angelman Syndrome, typed them with love, added the nutritional value and now they are ready to go. “From Our Table To Yours, Angelman Syndrome Community Cookbook benefitting FAST” is ready for purchase.

http://www.cureangelman.org/news/CookbookDetails.html

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Angelman Today May/June Issue published

http://www.angelmantoday.com/digital-editions/

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Celebration Life Magazine

featured our Angelman Syndrome Foundation walk in Orlando on the cover!!! See Page 1

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Parade Magazine this weekend for an article about Mother’s, Angelman Syndrome is the main focus of my section of the article – Suzanne Barge .

http://parade.condenast.com/289280/alisongwinn/mom-knows-best-inside-the-lives-of-six-american-mothers/5/

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Madonna Jusko Angelman Syndrome Interview for the ASF Walk with Mom Penny Jusko 2014

http://youtu.be/vK5XaPeTC6A

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Hundreds raise hope, funds for ‘Angels’

Eli Sukin and Elizabeth Cantu dance before an annual walk hosted by the Angelman Syndrome Foundation at Rob Fleming Park in The Woodlands

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Westford family hopes walk will raise more awareness of syndrome

WESTFORD — Resident Peter SanGiovanni said his 19-year-old daughter, Isabella, who lives with Angelman syndrome, continues to thrive every day.

Though she was born perhaps as the youngest ever to be diagnosed with the rare neurological disorder and cannot speak, SanGiovanni said Isabella radiates kindness every day.

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MAKING A DIFFERENCE: Angelman Syndrome Foundation Walk

In February, 18-month-old Weston Cecere of Plymouth was diagnosed with Angelman Syndrome. This Saturday, May 17, thousands will gather ..

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Family raises funds for rare syndrome foundation

Lakenewsonline.com

A Camdenton family is seeking donations for the May 17 Angelman Syndrome Foundation Walk, a fundraiser supporting a cure for the rare disease.

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Family raises funds for rare syndrome foundation

A Camdenton family is seeking donations for the May 17 Angelman Syndrome Foundation Walk, a fundraiser supporting a cure for the rare disease.

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Syndi Knowlton: Utah Valley 2014 Mother to Special Needs Children

Syndi Knowlton is a loving, patient, gentle, caring, selfless, incredible mother of three special needs children, whom she calls her “amazing superheroes.” Emily, age 18, has Ehler-Danlos Syndrome, Tom, age 14, is on the Autism spectrum, and her “princess,” Isabelle, is 9 years old and has a very rare combination of two genetic disorders: Rett Syndrome and Angelman Syndrome (both are devastating disorders, but Isabelle bravely faces each day with a laugh and a smile).

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Congressman, wife speak publicly about son’s disorder

WRTV Indianapolis

Angel is the term given to those who are born with Angelman syndrome, a genetic disorder that sometimes gets mistaken for autism. U.S. Rep.

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Caroline’s Cart: makes shopping easier for parents and their special need children 4.26.14

Amy Downey, shops with her son, Andrew, 8, who has Angelman Syndrome at ShopRite in Clark, with a special shopping cart to accommodate her ..

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Local family opens the door on little-known syndrome

His first born son Teddy is a happy, affectionate 6-year-old with Angelman’s Syndrome. It’s a rare a neurogenetic disorder which impacts 1 in 15,000 .. (Video)

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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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