Sestri Levante (GE), Italy
Tel. +39 342 9124574
Ataxia In Italy
It’s estimated that in Italy there are around 5,000 to 15,000 people suffering with ataxia, many of them are children or young adults. Friedreich’s ataxia is the most common ataxia with an estimated 50% diagnosis out of all cases of ataxia, but most patients are still waiting for a genetic diagnosis. In addition, ataxia itself is poorly known by physicians, making it harder for people to get a diagnosis.
The Italian Association that fights against ataxic syndromes is formed solely by volunteers and was created to encourage and promote scientific research in molecular genetics, biochemical and immunological research on the ataxias. Its mission, in addition to promoting scientific research, is to carry out information and promotion for the prevention of ataxias, to lend support to ataxic patients and their families by helping them to solve problems and finally, to raise funds to achieve these objectives. A.I.S.A. started its activity in 1982 in Milan, it was founded by a small group of parents who were looking for answers to questions on how to cope best with the disease on a daily basis. Today we are legally recognized by the Ministry of Health with DM 5 September 1995. We are also involved in the View Rare Diseases of the Ministry of Health, the Italian Federation for Overcoming Handicaps (FISH), the National Disability Council (CND) and we are also in partnership with Telethon.
We have our own website and we publish the quarterly paper "Archimede". We also operate as several branch offices with committee promoters in various Italian regions. A.I.S.A. has its own Medical and Scientific Commission composed by researchers from various Italian Universities. The Commission President is Prof. Filla from the University in Naples, the Ombudsman Commission is Prof. Longo, who was the former director at the Institute of Health. A.I.S.A. has many members throughout Italy. The number of patients with ataxia is officially around 5,000 although according to conservative estimates, the number could reach 15,000.
Raising Awareness of ataxia
Every year, A.I.S.A. promotes lots of initiatives to raise awareness about the medical problems and social issues faced by people suffering with ataxia. These events happen due to the kind support of other organizations, even if they aren’t involved in the social field. These events, in addition to spreading the knowledge of the different forms of ataxic syndromes, are designed to raise funds for the activities more specifically aimed at scientific research and to support patients and their families, which is our overall objective. The most important event that is organized annually is the World Day of Ataxia, on the 25th of September. You can find various meetings on the main squares’ cities all over Italy, in order to inform the public on the problems faced by people with ataxia.
A.I.S.A. supports research projects on ataxia through the payment of scholarships to qualified researchers that are working at neurological institutes in Italy and abroad. A.I.S.A. organizes medical conferences periodically that are aimed to provide an opportunity between doctors and researchers who are working in the field of ataxic syndromes to meet together. During these events the same professionals give updates on the current research both in the medical field and physiotherapy. The frequency of these meetings is not fixed in advance, but it is essentially influenced by the findings that the medical community considers especially important to shed light on ataxia and potential bearers of new drugs and new therapeutic techniques.
Helping People with ataxia and their families
Recently A.I.S.A. amended its Articles of Association in order to provide direct assistance to patients and their families when the state financial support is insufficient. We have recently started a project in collaboration with AISLA (Italian Association of Amyotrophic Lateral Sclerosis) and funded by the Youth Association of the service of Lions Club International , to create a network of operators who can provide useful information to people who have just discovered that they are suffering from ataxia.
In December 2009, we fought to reinstate the drug Idebenone on the list of drugs distributed by the Italian NHS for the treatment of cardiomyopathy in people with Friedreich’s ataxia.