Mr. Michael Parent September 6, 2007
Executive Director
National Ataxia Foundation
2600 Fernbrook Lane, Suite 119
Minneapolis, MN 55447-4752
Dear Mr. Parent,
I recently attended the Spastic Paraplegia Foundation TeamWalk Retreat in Kissimmee, FL. I wanted to support the Spastic Paraplegia Foundation and attend Dr. Clouse’s presentation since I missed part of it at NAF’s Annual Meeting this year in Memphis. Here is a copy of part of a letter I sent to the woman who put the meeting together:
Dear Kathi,
Thank you so much for inviting our group to the Spastic Paraplegia Foundation TeamWalk Retreat. I know it was a lot of hard work for you but it was a wonderful meeting and I am so glad we attended. It was informative to find out how similar our disorders are and it’s always wonderful to meet new friends and have additional support. Tom Clouse’s presentation was very enlightening. His words are definitely food for thought. Awareness of one’s body is so important and “taking responsibility for our own healthcare and thinking outside of the box of the label” we have been given is so important.
I was diagnosed with ataxia in 1995 and with the exception of the wonderful support from the folks at NAF, I have pretty much been given negative information about what I couldn’t do. One neurologist I used to see even told me “there is nothing you can do, it’s only going to get worse.”
It’s so refreshing to hear Dr. Clouse’s “can do attitude.” I know how much it has helped me personally. I began dancing classes and from there included yoga, pilates and aquatic therapy. He inspired me tremendously and as a result, I have improved so much!
I understand Dr. Clouse has applied with NAF to be an Ambassador for the Southeast Florida region. What a fortunate group of people to be associated with such an inspirational person!
I look forward to NAF’s Annual Meeting in 2008 in Las Vegas.
Sincerely,
Ann Mayo
St. Augustine, FL
Northeast Florida NAF support group