I have been reading these posts for years and found them very informative but this is the first time I have written. I have SCA6, inherited from my father, and am now at the stage that I am nearly always tired. I can still walk with a stick and my blue badge is invaluable. As is my husband!!! I have 3 daughters in their 50's who, as yet, have no symptoms and have not been tested.
My daughter, Sarah, has set up a fund raising account. FIXSCA6 which is linked with Ataxia UK and the proceeds will go to research in SCA6 and other forms of ataxia. She is wondering if anyone would like to donate or if they know of anyone doing a sponsored activity who would like to make FIXSCA6 the subject of their sponsorship.
It is Ataxia UK which will administer any moneys.
The answer to our problems is, most likely, to be found through research and, although it may not help us, it is hereditory and it would be lovely to help someone 'down the line'.