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Sébastien LOEB, committed sponsor for the French Association of Angelman Syndrome (AFSA).

AFSA

“I am happy to bring some help to the children of AFSA fight their diseases. If I can families to stay positive, I would be filled. We spent a lovely day during filming, it was nice to share these moments with Gatien, the team and the association. I give my full support to the AFSA, just like Sébastien Loeb Racing and we will be delighted to welcome the children in the future, on the circuits or other events. ”

– Sébastien LOEB

“Can you imagine a more beautiful relationship, more beautiful friendship for a disabled child that he can establish with a great champion, a great sportsman who agrees to look him in the eyes and say,” I recognize you, and I will support in your fight? On behalf of all children with Angelman syndrome, on behalf of their parents, family and friends, thank you to Sebastian. ”

-Denise Laporte, President of AFSA

For more information visit

www.angelman-afsa.org

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The Secret of Mael: Cartoon about the difference

Le secret de Mael

Le secret de Maël : dessin animé sur la différence
The secret of Mael: cartoon about the difference

Click to view The Secret of Mael: Cartoon about the difference

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http://youtu.be/d2sECQDAZG4

3rd Angelman Syndrome International Meeting-Paris

visuel rencontres

3rd Angelman Syndrome International Meeting

17 October  2014 – Paris

In 2012 the following four European associations: Nina Foundation (Netherlands), Orsa (Italy), AVO (Austria) and AFSA (France) joined to organize an international meeting bringing together researchers involved into Angelman syndrome (AS). The first meeting in 2012 in Rotterdam (Netherlands) was a huge success. The 2013 edition took place in Rome (Italy). Paris (France) will host this year the international meeting, organized by AFSA, on 17 October 2014. It will be followed by the French association’s national conference.

The international meeting is open to researchers and clinicians involved in neuroscience, gene therapy, neurodevelopmental disorders and this, particularly in the Angelman syndrome. It is also open to officials of European and international organizations created around the Angelman syndrome.

The aim of the international meeting is to encourage researchers to share their experience and knowledge about AS : for this reason, speakers present each other their scientific projects.

As Rotterdam and Rome conference have shown, direct exchanges definitely increase scientific research on Angelman syndrome, which is supported only by associations, foundations or fundraising.

Every two years, AFSA organizes its traditional two-day national meeting. This is a special opportunity for all French families affected by Angelman syndrome to meet and share their experiences and improve their knowledge. “Newly diagnosed families”, seeking answers and comfort, are particularly welcome. Medical and paramedical professionals (physicians, geneticists, psychomotors, physiotherapists, researchers etc.) take part to the national meeting and share with parents all the progress and improvements.

This year, AFSA is proud to combine these two major events: the international meeting will be followed by the French national meeting (18 and 19 October 2014).

More information can be found on www.angelman-afsa.org

Afsa’s fundraising page for the international meeting : http://www.alvarum.com/colloque-angelman2014

 

visuel colloque

AFSA – Association Francaise du Syndrome d’Angelman

AFSA

AFSA www.angelman-afsa.org

AFSA – Association Francaise du Syndrome d’Angelman

It will soon be time for the children to go back to school: AS children in French school – according to the 2005 law on legal rights of disabled persons, all children have the right to go to school in France, no matter how severe their disability is. Going to school is not mandatory, it all depends on the degree of autonomy of the child and on the dialogue between the family and the teachers.

Disabled children can be taken care of by an extra adult, helping the child with ‘everyday life tasks’ such as potty training, eating, putting cloths on and off…etc., but also in school tasks (understanding orders, having adapted responses and behaviors, doing things along with other pupils…).

 

Today, a certain number of AS children attend kindergarten between the ages of 3 to 6  for several hours per week to full time. All the others attend special schools for disabled children and young people from 3 to 20 years old.

Based on the experience of several families, AFSA (Association Française du syndrome d’Angelman) created a special guide to support parents through legal and administration questions and over all to help parents and teachers to build a positive strategy on the school project of every child, stressing all the peculiar aspects of Angelman syndrome.photo 1e couverture

The guide (in French) is split in two parts: one for the family and the other for the school teacher. Some working documents (description and assessment of the child, targets, follow-up work-book, examples of activities adapted to an AS person…) are available on AFSA website.

The guide is on sale at the following link: http://www.angelman-afsa.org/le-guide-de-la-scolarisation-i32.html

To learn more about AFSA, founded in 1992, visit us at:  www.angelman-afsa.org