Every step helps.
When we were 18 my mother took us to see a neurologist because of our increasing clumsiness. He made a clinical diagnose that we had FA and sent us for a battery of tests with a variety of specialists. Little was known about FA and it was suggested that life expectancy for us would only be 5 to 10 years. That was 23 years ago. A few years ago I had a DNA test done which confirmed Friedreich's Ataxia.
My younger brother, Joshua, does not have FA but is committed to helping find a cure for this disease.
A few months ago Joshua approached me suggesting that we should organize and host a fundraiser to help with the exorbitant research costs of FA. We were put in touch with Jean Phenix of CAFA who was able to help us plan and organize this event. He was able to secure our first corporate donor which indeed kept us motivated.
At this point we are looking towards a final resolution to FA and to prevent other families from going though the same pain that we have.
For more information on FA, check out my website at www.friedreichataxia.info
A group in Vancouver BC, now forms the Western Branch of CAFA, (Canadian Association of Familial Ataxias) Claude St. Jean Foundation/ACAF (Association Canadienne des Ataxies Familiales), Fondation Claude St. Jean.
CAFA’s western branch represents CAFA in the western provinces of Saskatchewan, Alberta and BC and promotes membership and directs funds to research through CAFA to ultimately discover and support treatments for a variety of types of ataxia.
We now have a chapter on Vancouver Island and we want to form chapters in other areas of BC, and Alberta and Saskatchewan to raise awareness about ataxia, clarify information about the types of ataxias and about CAFA to the western audience. With an English-only web page (housed on the CAFA/ACAF site http://www.lacaf.org/West/Index.html ) they will reach out to those living with ataxia in the west with information, guidance and understanding.
