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.

Monday, March 31, 2008

NAF - Las Vegas

And now here's what went on in Las Vegas...

We rode in to the hotel on Thursday to a great welcoming group. Cheering, champagne, TV crew, everything. It was actually a pretty emotional time. This was a big accomplishment for us all; it was the culmination of a lot of hard work by a lot of people, and we raised a lot of awareness and money for research in the process (more on that later).

Shortly after our arrival, we went to a Leaders' meeting for the whole afternoon. This is a small NAF (National Ataxia Foundation) meeting with just the leaders of the local chapters and support groups (Linda's the leader of the Central New York support group). We got some good information from the NAF leaders and from Dr. Susan Perlman (an expert in the field).

Thursday evening we had a quiet dinner out and then hit the sack.

Friday morning it was a joy to wake up and not have to put on the bike shorts, butter Andy's butt, chow down a bagel, and start pedalling. A slow awakening, a cup of coffee, and a crepe downstairs... it was so nice! Not that there was ever anything wrong with breakfast on the road, but after two weeks of the mental and physical assault brought on by the constant biking, this was sweet!

During the morning Friday, there was a selection of short sessions to choose from. We went to several, including one that Kyle was hosting about "Accessible Sports." They were all interesting.

For lunch Friday we went over to The Outback Steakhouse for another meal sponsored by them. They've provided amazing support on this ride! That afternoon, we attended the "Birds of a Feather" breakout session on Friedreich's Ataxia. This is the part of the conference where there are breakout sessions for each particular type of ataxia - we've always enjoyed this session. It turns out this year that there were far more attendees than during previous years, so they had to divide the FA session into three different groups all in the same room. Although it's nice to see more people attending, it took away from the close-knit feeling of the previous years, and it was not quite as intimate as before. It was surely good for the new people, but we didn't get as much out of it as before.

A reception was held on Friday night with a nice buffet. Here it is:


Kyle was the featured speaker, talking about the ride. Kyle's computer had broken down a few days before this, so he had been having trouble updating his blog and getting pictures off his camera. He had a massage lined up for 5PM Friday (given to him by Jina, I think), and he didn't have any pictures ready or any easy way to do it. So Linda, Tess, and I sat in the room with our laptop and created a nice slideshow for Kyle while he had his massage. Must be nice to be a celebrity!

Kyle did a great job with his presentation! He got a little emotional a couple of times (which is not uncommon), but he pulled it off with style, grace, and some humor thrown in! Here he is:


He had about 75 slides, which provided a nice look at the whole trip and everyone involved. The attendees all showed great interest in our endeavor. And they really appreciate the fact that the team has now raised over $110,000!!! That's incredible! Remember, this is a team of only about 15 to 20 riders. This isn't a lot of money if you compare it to what gets spent on cancer research, or Alzheimer's research, but for ataxia it's quite significant. The NAF funded around $750,000 in total projects for all of 2007! Our fundraising will provide a very significant increase in the money available for the coming year! THANK YOU ALL!

Kyle wrapped up the presentation by having all of the riders join him on the stage to be recognized and receive a Ride Ataxia medal from the NAF. Thanks Kyle!

Friday night we got to enjoy The Blue Man Group with some of the other riders. The daughter of a friend from church gave the team a bunch of free tickets to the show. Very generous and much enjoyed! (Thank you, Lee Ann!)

Saturday was filled with technical sessions presented by researchers. We were able to attend most of them. At least Linda was - Andy was pretty busy in the room tearing the bikes down, packing them up, and getting them shipped. The sessions were good, and the information was typical of previous years. It is clear this year, however, that they're getting much closer to the treatment phase for Freidriech's Ataxia. There are now five different drugs in various stages of clinical trials or about to enter trials. Just a year or two ago there were NONE. The different drugs all act in different ways - one removes iron from the mitochondria, one removes damaging free radicals, one boosts frataxin. It's not clear yet how effective any or all of them will be, but this is obviously a new era. An era of hope.

Here's a view of these technical sessions:

This room is a lot bigger than it looks here, by the way. Those are two huge screen for the presentations. There were around 650 people attending this year, with about 200 first-timers! It really is growing significantly every year!

There were a few more technical sessions scheduled for Sunday morning, but we had to catch our plane and get home. To be honest, we've been following the research pretty closely anyway, so this information is not really new to us.

All in all, it was a very good meeting, and it is so encouraging to see the progress that is being made and to feel like we're part of what's driving it forward. Again, thank you for helping us make it all happen!

2 comments:

  1. Andy and Linda, thanks are due to the both of you for your time, dedication and enthusiasm which inspires all of us. We thank you for the opportunity to spend some time with the kids and hope we were not too hard on them...We love reading all the comments on your blog and all the pittures are great. Thanks for the final update also.
    We made it home on Tue. A grinding 689 miles from Caz. To P.I. took us two days by car...I wonder how long it would take us by Bike???
    Our love to you all,

    Mom and Dad J.

    ReplyDelete
  2. Kyle's slide were GREAT - Thanks!
    sPinner

    ReplyDelete