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Walking | Websites | Weight Gain | Wheelchairs | Who’s Who of Angelman Syndrome

 

Walking

We had great success in teaching our grandson to walk in the swimming pool where the water helped keep him on his feet and legs.
Hardy Zantke, Torrance, CA grandfather of Finn, age 7

Our daughter took almost five years to walk. Initially, we were told she would never walk. We insisted and provided her with Physical Therapy sessions during all this and she was literally taught how to crawl, stand up, and walk.
Harold Mendoza

I wish someone had suggested we get a helmet for our daughter when she started to walk. Everyone was afraid she wouldn’t like the helmet because of her sensory issues, but she loves it!   Our PT recommended we try a front walker (instead of a rear walker) and that worked great.
Christine and Giovanni Rompato  Logan, Utah  angel Chiara,  age 5

Our son started crawling when we started The Philadelphia Method best known as The Doman Method that helped him start the walking process. After creeping, came crawling and then the walking. It took about 3 years for him to learn how to walk. (ages 2 to 5)
Brisia Barba  Chihuahua, México, angel Mario, age 9

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Websites

Angelman Syndrome Foundation: http://www.angelman.org/

Foundation for Angelman Syndrome Therapeutics:  http://www.cureangelman.org/

Australia: Australia Angelman Syndrome Association  Email: amfmcon@bigpond.com.au

Brazil: Association Community Syndrome of Angelman (ACSA)   Email: sueli.ribas@cox.net

Canada: Canadian Angelman Syndrome Society  Email: info@AngelmanCanada.org
Angelman Syndrome Foundation of Quebec   Email: info@angelman.ca

Czech Republic:  Czech Republic  Email: angelman@email.cz

Denmark: Angelmanforeningen i Danmark  Email: angelmanforeningen@gmail.com

France:    France – Association Francophone du Syndrome d’Angelman (AFSA)   Email: infos@angelman-afsa.org  http://www.syndromeangelman-france.org/

Germany:   Germany – Angelman e.V. Email: as-info@angelman.de

Israel:  http://www.angelmanisrael.org/

Italy:  Italy – Organizzazione Sindrome di Angelman (O.R.S.A.)    Email: orsa@sindromediangelman.org

Japan – Japanese Angelman Syndrome Support Group (JASSG)   Email: masako-m@ck9.so-net.ne.jp

The Netherlands:   The Netherlands – Dutch Angelman Syndroom Association   Prader-Willi/Angelman Vereniging?  Email: werkgroep@angelmansyndroom.nl

Spain: Spain – Asociación Síndrome Angelman de España (A.S.A)   Email: azulmar_c@ya.com

Sweden: – Angelmans Syndrom Föräldrarförening (ASF)   Email: a.lack@telia.com

United Kingdom:   United Kingdom – Angelman Syndrome Support, Education and Reseach Trust (ASSERT)   Email: info@angelmanuk.org

Contacts in Countries with no National Associations:

Egypt:  Amira Khalifa Email: akhalifa@idsc.net.eg

Belgium and Luxembourg  Section: ANGELMAN AFRAHM Isabelle Wegnez

Ireland: Rosemary Teggin  Email: rosemaryteggin@eircom.net

Mexico:  Mexico   Marina Cardoso Email: marinacardoso@terra.com.mx

New Zealand: The Angelman Syndrome network:  https://angelmannetwork.wordpress.com/

Poland: Janusz Rozalski Email: rettsyndrom@pf.pl

NORD  (National Organization for Rare Disorders  (Angelman Syndrome link)

http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/411/viewFullReport

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Weight Gain

Our thirty-five year-old son began gaining weight and would lean forward to walk.  The doctor determined that Mellaril was the culprit and stopped it.  He was able to return to his regular weight and is now stable at 126 lbs. He is 5’4” tall.  He is taller than Mom and shorter than Dad.
Susan Pike

We try to feed our angel more natural foods. He has three meals and two snacks a day.
Brisia Barba  Chihuahua, México, angel Mario, age 9

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Wheelchairs

Our thirty-five year-old son is mobile and can walk short distances, but a trip to the fair is too much. We began using a wheel chair for outside activities and shopping.
Susan Pike

The “Quickie” brand has worked well for our daughter.
https://www.quickie-wheelchairs.com/

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Who’s Who of Angelman Syndrome  (SEE RESEARCHERS)

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