We're Linda and Andy Johnson, from Cazenovia, New York. We've recently embarked on an exciting journey. Last year 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 this year and we joined him! For this trip, we left from Sacramento on March 15 and arrived in Las Vegas on March 27.

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! We met up with many of them again when we got to Las Vegas, where we heard the latest news from the researchers. Let's give them the funds they need to solve this problem once and for all!

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 or to find out more about the ride. And please... it's not too late to Help Find the Cure!


Monday, April 7, 2008

Sean's Carrying the Olympic Torch!

Andy writes:

Awesome news! Our own Sean Baumstark (one of the Speedy Boys) will be carrying the Olympic torch next week in San Francisco! Way to go Sean! Check it out.

Posted at 3:52 PM 1 comments

Friday, April 4, 2008

Slideshow

Andy writes:

I posted the slides from Kyle's presentation plus a few more. You can get to them with the "Slideshow of the Trip" link at the right or just click here.

Posted at 4:11 PM 3 comments

Wednesday, April 2, 2008

Reflections

Linda writes:

The purpose of joining Ride Ataxia II was to raise funds for much-needed research and to raise awareness of this debilitating disease.

Immediately, the cards/letters/emails and donations came flooding in. We were truly humbled by the amount of support we received from our friends/family AND from people we didn't even know but who wanted to help!

The team exceeded our goals with your help by raising over $110,000 and generating much newspaper and television press, but as soon as the ride began it quickly became more than a fundraiser and awareness campaign.

On the bike, even though it was actually a trike, I felt very “normal” - even extraordinary to some degree. Now I was purposefully doing something that would hopefully improve my life and other people's lives. There was no stumbling, no slurring, no hesitation; there was only pedaling and a warm, positive, proactive feeling that far surpassed any soreness that may have existed.

The camaraderie shared among the group for this common cause is one I will not soon forget. Four of the thirteen riders that did the whole ride had ataxia and the other nine were close friends, family, or significant others that felt lovingly compelled to be there. The support for each other was heart-warming.

And so in short, I would rate this experience right at the top with the best of them in my life. And I would encourage everyone to become passionate in a giving role, whether it be riding to raise funds and awareness for a cause, volunteering at a place that appreciates you, or providing financial support when asked … it’s all good, and you won’t be sorry.

Much love and sincere thanks,
Linda

Posted at 8:05 AM 1 comments

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