The first minutes of the association were registered on March 9th 1995.
The Associació Catalana Síndrome X Fràgil began with just 12 founding members, and now there are more than 120 families!
During these years our headquarters have moved. Right at the start, the Hotel Gran Via welcomed us. The first legal headquarter was at Quelli Furgang’s although that year a few of the meetings also took place at the Joan Miró’s state school.
Towards 1997 we set up our office at the Street Providència thanks to the Social Department of the Generalitat (the Catalan Government). In 1999 we rented a flat at the Street Burriana, at St. Andreu. And now La Salle Gracia School has provided us with premises for our office.
The best way to explain our history is to convey to you some of the words from the different presidents of the Association:
Carles-Miquel Fauró i Sànchez (1995-1996)
Unfortunately on one hand, but also a lucky strike on the other… we were not alone. For the first time, a few families stopped feeling alone and odd…
Maybe the association is not the solution for our children, but it can become a very useful and valuable tool for families to help them make the best decisions.
Albert Lahuerta Montoliu (1996-2002)
One belongs to this association due to the connections, be those close or far, with the Fragile X Chromosome, with affected boys and girls, with their relatives, for one’s children… and this is, in addition to the fight to improve our association, the great value that stands out, beyond all doubt.
Manel Rodes (2002-2004)
Being the President of the Association has been a very interesting experience. I am grateful for having been able to contribute to the improvement of our children’s lives and of every person with Fragile X Syndrome.
Mercè Bellavista (2004- at present)
Everybody can contribute to the Association, collaborating as much as you can or wish.. You are always invited to contribute and all initiatives are welcome. We all know that it is not always easy work, but remember why we are here? We are all together fighting for the same cause: our children.