Angelman Announcements March 2015

Giving Barnsy 18,000 reasons to smile | Photos

 
DUBBO residents gave Barnsy a reason to smile on Saturday evening at St Johns Primary School, with more than $18,000 raised for Barnsy and his family.
dailyliberal.com.au|By Fairfax Regional Media
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Just keep swimming….Because Max is still smiling! Max is a 13-year-old boy who loves horseback riding, going to the pool and watching movies with his family….
globalgenes.org
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Zaina has her own ace team

She has seen a parade of home support workers come and go over the years. Four of them lasted no more than a day; some lasted a few weeks; a few have managed a year. This is because caring for Zaina, a young woman with…
ihc.org.nz
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Six-year-old’s daily battle with rare condition

BALLARAT: Virginia Knight has only one wish in life: to see her son one day be able to walk and talk.
theadvocate.com.au|By Fairfax Regional Media
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Honoring Hayden

Honouring Hayden

Rebecca Kimball will never watch her daughter step on the bus for her first day of school.

She’ll never get to pin up her curly hair and send her off on her first date.

She’ll never be able to adjust to the diagnosis of a rare genetic disorder her daughter Hayden received just weeks before she died.

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Press and News | ‘It’s a life-changing resource for families like ours’
Community ‘It’s a life-changing resource for families like ours’ By Alicia Miller March 5, 2015 at 8:35 am Maple Grove Cub tests out carts for special needs children A Maple Grove business has made the shopping…
pressnews.com|By Alicia Miller
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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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Angelman Announcements #2 July 2014

Fighting Angels Foundation

FAF was founded in honor of Joey Moretti Jr. and all the Angels with Angelman Syndrome. We help raise awareness and fund research for AS.

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Must be an angel: Brave girl with rare disorder can’t talk or sleep… but can never stop smiling

30th July 2014

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A mothers wish for the simple things. The often unseen side of Angelman Syndrome – things that can be taken for granted. An inspirational video from the Touched by an Angel fundraiser held by Angelman parents Frank & Joanne Caracoglia.
Produced by Upstair Studios.

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A touching clip where some Australian parents and siblings reveal the one question they would ask their loved one with Angelman Syndrome. What would you ask?

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On the side of the ‘Angels’

Fighting Angels Foundation, the nonprofit organization devoted to raising awareness and funding research for Angelman Syndrome, hosted its first .

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Scissor sisters and their brother raise money for charity

Belle has Angelman Syndrome, which means that despite being a happy child she is unable to walk, talk or eat without assistance and suffers from …

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Wheels widen world for people with disabilities

Gavin, 27, has Angelman syndrome, a genetic neurological disorder that affects about one in 15,000 people. People with the syndrome have developmental delays and cannot speak, but are most distinguished by a never-fading smile and consistently happy …

 

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Angelman Announcements #1 July 2014

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Wheels widen world for people with disabilities

Gavin, 27, has Angelman syndrome, a genetic neurological disorder that affects about one in 15,000 people. People with the syndrome have developmental delays and cannot speak, but are most distinguished by a never-fading smile and consistently happy …

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Rising Stars fight for angelman syndrome in boxing event

AS THE name suggests, the Rising Stars 2 event is set to bring some of the best up-and-coming boxers from throughout Australia and the world to Caboolture.

With seating for 3200 spectators, the Queensland State Equestrian Centre provides the perfect arena for this impressive event, which will not only be a great night out, but will also raise awareness of Angelman syndrome through a charity fight.

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This is is a great video presentation click on the image to open the page to view

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Take Flight has been established to raise awareness and funds for Angelman Syndrome, an extremely rare genetic condition affecting just 2,300 people in Australia.

Angleman Syndrome is often characterised by developmental delay, severe speech impairment and an associated seizure disorder that is typically difficult to treat.

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15 July 2014

Medicinal Cannabis Oil

 

14th July 2014

Leamington siblings raise funds with their sister in mind

At Geiko hairdressing in Leamington on Tuesday Belle’s sister Leila, nine, will have her long hair cut off to raise money for the Angelman Syndrome …

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06 July 2014

Jack’s Helping Hand seeks funds to build playground for kids with special needs

Her son, Tassie, who was born with gastroesophageal reflux disease and a developmental disability calledAngelman Syndrome, required six surgeries.

 

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July 01 2014

Mother Ignored By The Oklahoma Legislature He has Angelman’s syndrome and epilepsy and the medication he takes for constant seizures isn’t working. Sonya wants Jonas to have CBD oil,

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Charity helps kids with disabilities get moving

Lana Kruger’s 7-year-old son Dominic suffers from a debilitating neurological disorder known as Angelman syndrome, which causes severe developmental delays.

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6/16/2014 – Andy & Lora Meerdo about the 1st Annual Angelman Syndrome Charity Golf Event  – Wonderful Podcast worth a listen.

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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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Angelman Announcements – February 2014

BISD parent: Special education teacher struck my daughter

Thibodeaux’s daughter has Angelman Syndrome and does not talk, but, Thibodeaux said, she understands everything someone says to her.

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Parents lobby for son’s rare disease

Richard Newton holds his 20-month-old son, Garrett, as he and his wife, Alyssa, talk about the boy’s diagnosis with Angelman syndrome during a fundraiser Monday at Chili’s Grill & Bar. Glenn Moore/Tracy Press. slideshow. Twenty-month-old Garrett Newton _________________________________

ASF Educational Webinar Series

Stay up-to-date with important topics related to Angelman syndrome with these interactive webinars.

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Angels’ fight to find cure for rare genetic disorder

Monroe Courier – 20 January 2014

Two-year-old Monroe resident Joey Moretti is fighting Angelman Syndrome, a rare genetic disorder that experts believe there may be a cure for.

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Support shown for youngster with Angelman syndrome

The Chronicle Journal

Leia Portfors, mother of Kandem Trewin, 7, who has Angelman syndrome, spoke about the school fundraising on Tuesday. “Gorham and Ware did the ..

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Living with Sean and Angelman syndrome

Gibraltar Chronicle

The permanent smiles on the faces of most individuals with Angelman syndrome (AS), Sean included, belie a life marked by daily challenges 

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Calling all angels 

The Rivard family pose in front of their Medicine Hat home. Alan holds son Jacob while Sarah holds daughter Hannah, who has Angelman’s

 

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Devizes Opportunity Centre ‘fantastic for us’

The Wiltshire Gazette and Herald

Ollie, two, of Cromwell Road, Devizes, suffers from Angelman syndrome. He made a dramatic appearance into the world when he was born at home 

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Glenwood Springs mom runs to raise funds for son’s rare medical 

Glenwood Springs Post Independent – COM Candy Granger-Underhill of Glenwood Springs with her son Sam Underhill, who was born with Angelman Syndrome, a rare neuro-genetic 
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Salisbury family hope for a cure for their son Timmy, 2, with Angelman Syndrome ahead of 

The Queensland Angelman Association Picnic is on February 15 from 11am at Broadwater Park, Mansfield. For more information on the syndrome 

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Angelman Announcements December 2013

vzw Angelman Syndroom organiseert Music For Life Actie op Kerstmarkt

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FAST Global Summit 2013

WWW.USTREAM.TV
The Foundation for Angelman Syndrome Therapeutics (“FAST”) is pleased to announce that the 2nd Annual Global Summit on Angelman Syndrome will take place on Friday and Saturday, December 6-7, 2013 at the Hyatt Regency Chicago.There will be one seminar on Friday afternoon December 6th 2013 hosted by Erin Sheldon M.Ed. on using IPAD to promote learning and literacy for those with Angelman Syndrome called, “Is there an app for that?”

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Joelle Ketchum is interviewed about Angelman Syndrome

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Syndrome Angelman France – 2014 – YouTube
3 min
Sign in to YouTube. Sign in with your Google Account (YouTube, Google+, Gmail , Orkut, Picasa 
youtube.com

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Charity swim a success

On Thursday evening, adults and children from the squad participated in a 5km swim to raise funds for those living with Angelman Syndrome. Earlier in the week

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Special Olympics: Bocce, photos day 2

He said he got involved in coaching because of his son, David, who is now 25, is believed to have Angelman syndrome. One of the indicators of the genetic condition – which involves intellectual disability – is a fascination with water.

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Vienna Elementary to Mark ‘Inclusion Week’ Starting Monday

On Monday, students are asked to wear multicolored clothing to represent the puzzle piece for autism. Tuesday’s color is green, representing cerebral palsy.

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In the Pipeline: More than just a day at the beach

Anthony suffers from Angelman syndrome, which is a neuro-genetic disorder characterized by severe intellectual and developmental disability, seizures, sleep disturbances, frequent laughter or smiling and a usually happy demeanor.

 

WORDS WALLY INTRODUCES

The first time I met Jiann Imutan, it took me a while before I realized anything different about her. She got her looks from her mother–expressive eyes and high cheek bones. It was during their brother’s baptismal, and her father, Jeffrey Imutan, had kindly invited my sister and I.

Jeffrey Imutan is our head animator here at Beyond Notebook.

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THE HOLIDAY EDITION IS AVAILABLE

AT

 

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