Fanny was born on March 24th 1989. She changed the life of our family. Fanny has Moebius Syndrome. It was diagnosed 9 months after her birth, in a hospital in Paris.

   
 
 
For Fanny and for all the Moebius children  

 

 

 

 

 

 

 

 

 

 

 

 

Olivier de Roffignac
(see insert)

Back in Brest, we had to cope with it and fight. Fanny is now 12. Her sensitivity, her joie de vivre, changed our idea of what life should be.

To see our children happy, even if they are different, is our raison d’être and every day and joy.

We carry on fighting for her and all the Moebius children. This fight started in 1989. The lack of information about the disease together with the development of new technologies persuaded us in 1997 to set up a non-profit-making association based in Brest (Brittany, FRANCE). We have made a list of 77 Moebius so far. Our association has 50 members, including 38 Moebius.

We hope to:

- organise a better Moebius census
- create a network of Moebius families
- inform the public and heighten public awareness
  about this orphan disease

Our association appears online in the database of ORPHANET – orphan diseases - (http://orphanet.infobiogen.fr/). It is also a member of EURODIS (http://www.eurordis.org/). We take part in the action of the Committee for Rare Diseases represented by Alliance (http://www.alliance-maladies-rares.org/).

The Media have supported our cause:

- France 3 Bretagne (http://www.france3.fr/),
- la Cinquième (http://www.lacinquieme.fr/),
- Ouest France (http://www.ouest-france.com/),
- le Télégramme de Brest (http://www.bretagne-online.com/),
- le Pèlerin Magazine.

I would like to thank the city of Brest (http://www.mairie-brest.fr/), the Conseil Général du Finistère (http://www.cg29.fr/), the Conseil Régional de Bretagne (http://www.region-bretagne.fr/), the staff of the school “Le Collège des Quatres Moulins” (Brest), the friends of the Moebius families for their involvement with our association.

I would also like to thank a sailor, Olivier de Roffignac, for having been moved by the cause of the Moebius children.

In our last General Meeting, we set up a few guidelines that will hopefully ensure the durability of our fight. In the near future we hope to:

- set up a multidisciplinary consultation,
- strengthen bonds with other (notably European) Moebius associations across the world,
- develop our website to ensure better information about the Moebius Syndrome.

We rely on all and every one of you to help us put Moebius Syndrome on the map, and to support us is our projects.

Serge LETISSERAND, Président

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