We're Linda and Andy Johnson, from Cazenovia, New York. What began as a blog about a bike ride has become a story about our ride through life, trying to overcome a disease that has had a huge impact on us and on many of our friends.

Our journey began in 2007, when Kyle Bryant originated the idea of Ride Ataxia - riding his three-wheeled cycle from San Diego to the annual National Ataxia Foundation meeting in Memphis. It took two months to get there, and in the process he raised $40,000 to fund Ataxia research and he raised awareness of the disease like no one has before. Well he rode to the annual meeting again in 2008 and we joined him! We left from Sacramento and arrived in Las Vegas two weeks and 650 miles later.

You see Linda also has Friedreich's Ataxia. This inherited disease causes the nerves of the body to deteriorate. Linda (and Kyle) can still walk at this point, but it's getting much more difficult. In addition, speech gets slurred, finger dexterity suffers, and other serious complications can develop as time goes on.

The good thing is that research is more promising than ever! Several drugs are going through trials at this time, with other significant research taking place as you read this. There has never been a better time to contribute to this research! Let's cure this disease - for Linda, for the rest of the Ride Ataxia team, and for all of the others afflicted with this disease!

Enjoy our blog! Feel free to write to us any time. Check out the links in the right column below to read more about the disease and our adventures. And if nothing else, be sure to take the seven minutes to watch FARA's video - we couldn't say it better ourselves.

Tuesday, March 4, 2008

Friedreich's Ataxia Video

Linda writes:

I encourage you to watch this short video regarding Friedreich's Ataxia. I could not have said it better myself. I only used one kleenex. Thanks for watching.

1 comment:

  1. i have a cousin with this diagnosis, and it is just as heartbreaking, and probably more than these peopole make it out to be, my cousin is my number one ande he is always there for me, i remember the days when we were younger and we used to play baeball, tag, hide and seek together and he would all constantly,he would roll over his ankles and cry, i think his progression is much more rapid than the people i have seen in this video, he is wheelchair bound and has been for a while, he just turned 13, same as myself, we try to play online together on video games as much as possile, but it makes it hard on me for school, sports, and social life when all i do is play video games at homewith him, but i think it's worth it, because the day he passes i know he will always have a special plae in my heart, and i one in his. i think the people who make these efforts are angels, and should continue their work, i hope to go into the medical field when i am an adult, and believe there may be hope in genetics research, but in all honesty i hope to god these guys beat me to it, for my cousins and everyones elses's loved ones sake whose time is running out.

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