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.

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

1 comment:

  1. The camaraderdie shared amoung the group is one that I will not forget! Thanks all!
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