4 years ago I was diagnosed with EA2 and as of March 2008 was unable to work. I have been lookig for any support groups or Canadian association but have found none.
I have found this group and several other very helpful ones from the United States, but feel that there is a need to be filled in Canada also.
If anyone knows of one please let me know.
I am sure someone can point you in the right direction
http://www.ataxia.org/ and http://www.curefa.org/ might have more details
also our sister ATAXIA site http://americanataxianetworking.ning.com/ Also powered by Ben`s Friends Rare Disease communty network.
I think one of our Ataxia South Wales member has family, living outside Winnipeg
my friend in Canada replies as follows
Hi Patsy and Tom,
Yes, there are at least two groups I know of. We have a BC Ataxia Group, And I believe there is one in the Toronto/ Quebec area. There may be more. One of these days I will research this and let you know what I find.
Love to you,
I am aware of the BC group, they however, are on the other side of the country from where I live. And as far as an Ontario or Quebec group I have found none.
I have contacted the BC group and am awaiting a reply.
I think that I will simply start my own. I've been sitting on it for a while now. In fact, I've already completed the charity registration forms and simply need to establish my board of directors and submit the docs and pay the fee's.
Thought I would aaround first.
Thanks for the feedback.
Tom have received this message from my friend, Patty, in Canada [sorry our names are confusing!!]
Patsy, I have contacted both our BC Ataxia Group and and a separate group we have here we call AHA (Ataxians helping Ataxians) We support each other, compare symptoms and what works for them, etc. I don't have an email for Tom, but have asked them to check and see if he has tried to contact anyone. As soon as I have ask email for Tom, I will pass that one. We have one or two other members in the Ontario Area.
Thank you for sending this email along. My email address is ■■■■■■■■■■■■■■■■■
I look forward to hearing from someone.
thanks Tom - have sent friends request on FB x
Please forward your friends names to
Lisa Leadbeater Hethterington
In facebook. I suggested she bring her husband to a support group meeting in Ontario, if there is any. If not, maybe they can at least get together.
Hi… I just found this group last night. Am also a Canadian…Edmonton area. I found Ataxia Canada, lacaf.org, which has some information. It is from the Quebec area, and they didn’t know of any support groups out here.
If you’re on Facebook, do a search for ataxia support groups. I’m a member of a few, and I think you might find other people in Canada. If you’re looking for information about ataxia in general, www.ataxia.org is a good place for reliable advice and facts