The BC Ataxia Society was created to connect and support people with ataxia and to work to raise awareness and promote research opportunities. Because the National Ataxia Foundation (NAF), (http://www.ataxia.org in the US, is a much larger organization that funds a wide variety of research. They also list us as a support group which helps us connect with more people, from across Canada.
The NAF also holds an annual membership meeting in the US. Five to six hundred people attend each year, many for the first time, but never the last. People with ataxia and those who support them come from all over Canada and the United States and some travel from as far away as England, Argentina, and Hong Kong. There is one common link within these families--and that is ataxia.
We believe this conference is an important forum to connect people with ataxia, raise awareness about the key issues, and share information about cutting edge research. Because the 2009 meeting will be in Seattle, the closest meeting ever to people in British Columbia, we want to take this opportunity to increase Canadian involvement.
The NAF conference consists of workshops, speeches about the different types of hereditary ataxias and sporatic ataxia from prominent researchers and doctors from around the world, the Friday night first timers reception, the Saturday night banquet, and meeting Kyle Bryant (the 25 year old with Friedreich’s Ataxia, who rode his trike from Sacramento to Las Vegas and raised over $110,000.00 for research). One of the best things about the conference is meeting all the people with ataxia. There is also a Birds of a Feather 3 hour session where individuals with the same types of ataxia get together and talk to the doctors and ask any questions they want.
There are also reports on research that is being done in all forms of ataxia. The first goal is is to stop ataxia from progressing, and the next step is to reverse the damage it has caused. To do this researchers need money to continue to find answers and to supportclinical trials.
In March 2009 (Mar 20 – Mar 22), BC Ataxia Society has been asked to co-host the meeting along with the Seattle support group.
With our support, this will be the first international meeting. The primary reason the annual meeting is held in a different city each year is to give ataxia families a better chance to attend because many have financial restraints. Even in those cases, many ataxia families cannot afford the travel and lodging to attend.
The NAF has structured the registration fees to allow more people to attend. In doing so, the registration fees account for less than 40% of the cost to host the meeting. BC Ataxia Society would like to raise funds to contribute to the conference in Seattle. $10,000 is needed to help fund this conference, but of course any amount we can contribute would be great. As BC Ataxia Society is a registered charity, a receipt will be issued for every donation.
Please help us reach this goal, and take this opportunity, until the end of July 2008, to fundraise on these pages and use these tools to make it easier.
Much thanks to you for your care, understanding and support.