International Ataxia Awareness Day 2012

On September 2012, for the fourth year running, the Canadian Association for Familial Ataxias –Claude St-Jean Foundation (CAFA) will be joining the international ataxia awareness movement. Several activities will be taking place on, and the days le

Montréal (I-Newswire) August 30, 2012 - On September 2012, for the fourth year running, the Canadian Association for Familial Ataxias –Claude St-Jean Foundation (CAFA) will be joining the international ataxia awareness movement. Several activities will be taking place on, and the days leading up to, Sunday, September 25 in various cities across Canada.

International Ataxia Awareness Day is a great opportunity for ataxia groups around the world to inform the general public about what it’s like to live with a degenerative neurological disease.

Ataxias are a group of disorders of the nervous system encoded in the genes of individuals. They have in common the inability to coordinate voluntary movements but differ in their varying symptoms and impairments. These progressive diseases lead to a gradual loss of physical abilities in those affected, often leading to complete incapacity. These diseases are rare and currently incurable.

CAFA is a group representing people with ataxia in all of Canada, though the majority of members are from Quebec and New Brunswick. Most cases of Friedreich’s ataxia—the most devastating and most common form—are observed in the western parts of Western Europe. Since the major part of Quebecers can trace their ancestry back to these regions, many sufferers and carriers can be found in Quebec as well as the rest of Eastern Canada.

CAFA was created in 1972. Its main goal was to increase public awareness about familial ataxias and to finance medical research into these diseases. Since then, the association has raised almost $15 million for research. Today, we are close to understanding the causes of Friedreich’s ataxia and medical science is ready to move on to the crucial step of developing a therapeutic approach to halt the disease’s progress in affected individuals.

Today, CAFA finances several research projects, rendered possible almost exclusively thanks to the efforts of individuals—ataxia sufferers, parents, friends, supporters—who give their time and energy in the fight against familial ataxias.

On Sunday, September 25 and the days leading up to it, CAFA, its members and its supporters will organize awareness and fundraising activities—walks, soccer tournaments, information booths, publications—including annual events:

September 22, Garry Point Park, Richmond (British Columbia)
September 22, Heydenshore Park, Whitby (Ontario)
September 23, Kiwanis Memorial Park, Saskatoon(Saskatchewan)
September 23, Borough St-Leonard, Montreal (Quebec)

Any and all help is welcome: media, financial, and volunteer.