Friedreich's Ataxia patients suffered from terrible isolation during many years. In order to bring them together we decided to found the Swiss Association of Friedreich' s Ataxia. We are a small group of parents, friends and patients who want to escape this loneliness and get better medical information. For too many years, the almost non-existing research condemned FA patients to physiotherapy and some vague neurological advice.
In 1998 a team of French researchers discovered the existence of a substance called Idebenone , particularly efficacious for FA patients suffering from cardiomyopathy. During more than 5 years we were able to offer this experimental drug to our Swiss members, this was only possible with the financial help of ASRIM (Association de la Suisse Romande et Italienne contre les Myopathies) and the Téléthon. But we were also working hard to get the drug Mnesis (idébénone) recognized and reimbursed by health insurance. We are proud and happy to announce that since July 2004 Mnesis is reimbursed to Mnesis for FA patients with cardiomyopathy. Our group continues to encourage researchers in the world, hoping that other active ingredients showing neurological effects will be discovered.
So please join us to reinforce our group in this ongoing battle. Write to us or send us your testimonies and we will publish them. Let us make these pages as lively as possible and let them become a place of friendship.