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, November 17, 2009

CHOP Symposium

We attended the FA symposium at Children's Hospital of Philadelphia this past weekend.  It was a great event - very well done and informative.  Thanks to CHOP, FARA, and especially all of the doctors and organizers for a great job!  You can find videos of the presentations here.

Tuesday, October 27, 2009

We Did It!

Before we go over the great ride in Philly, let's recap a little bit...

Three years ago, Kyle Bryant made a decision that would change the lives of many people who had never even heard of him. He has Friedreich's Ataxia, the same disease that Linda has. Each year in March the National Ataxia Foundation holds its annual membership meeting, and the 2007 meeting was scheduled to be in Memphis, Tennessee. Wanting to take some sort of control of his situation, he got on his three-wheeled cycle and pedaled from San Diego all the way to Memphis to the meeting. His dad, Mike, rode with him, and his mom, Diane, drove a truck and trailer, made camp, and kept them fed. Uncle Steve, Spinner, and a few others joined them for parts of the ride too. Kyle's goal was to spread awareness of the disease and raise money for research toward a cure. It took two months of pedaling to cover the 2800 miles, and they raised $40,000 and a lot of awareness. To the ataxian community, Kyle jumped to rock star status.

The following year, we joined him for Ride Ataxia II, pedalling from Sacramento to the 2008 meeting in Las Vegas. 50 riders participated on the first day, and 16 completed the entire trip. It took two weeks, we travelled 650 miles, and we collectively raised $142,000 toward FA research. Many of you contributed to our success and followed the adventure here on our blog.

In March of this year, the NAF meeting was held in Seattle, Washington. Even though that area is known for its cold rainy weather at that time of year, it didn't slow the effort down. 70 riders rode for a week from Portland to Seattle. Mother Nature certainly came through with cold, wind, rain, sleet, and more, but the Ride Ataxia team did too, raising over $220,000.

In conjunction with this, over the last couple of years the Outback Steakhouse family of restaurants has joined FARA and Ride Ataxia in its initiative to find a cure for FA. We all know that the cure is within reach and now is the time for the big push. The Outback has been amazingly generous throughout this time providing, meals, support, funding, donations, and great people to help us all reach the finish we're striving for.

And now we come to Ride Ataxia Philadelphia. This was the first of what will come to be many "local" rides - soon to be several each year. It was truly amazing - a major step up in organization and participation. Kyle has now officially joined with FARA, and with the Outback Steakhouse they have taken this event to the next level. Here's a run-down of what took place this weekend:

  • Three courses: 10 miles, 25 miles, 50 miles (all excellently marked, by the way)
  • 350 cyclists!!!
  • Unbelievable catering by Outback Steakhouse, Carrabba's Italian Grill, and Bonefish Grill
  • Sponsorships by many great organizations, including Hank's Beverages, Allied Beverage, Miller Coors, Heineken, and more
  • Family fun activities - face painting, moon bounce, Clydesdale-drawn hay rides, magicians
  • Free massages (no kidding!)
  • Great weather!

We can't overstate the level of preparation and support that went into this! And it wasn't just about the ride and logistics. There were many, many FA families gathered together who all share a common (though maybe unwelcome) bond. There were our great FA researchers, doctors, and assistants. It's not every day that you're registering for a fund-raising bike ride and the lady that has volunteered to hand out registration packets is the same one that was doing clinical tests on you a week before. And to see one of the leading researchers raise thousands of dollars, squeeze into some cycling pants, and ride 50 miles to help the cause really says something of the spirit of this effort (thanks Dr. Lynch!).

We were thrilled to see many of our old friends and meet many new ones. Friends that are truly life-long friends.

But the ride... Oh, it was scenic. And it was fun. But it was tough - at least for some of us. Linda and Kelly rode the 10 mile route. Andy and Brian, although signed up for 25 miles, decided on doing the 50 mile route, riding with Kyle and his dad. That would all be fine, but the course was VERY hilly. Felicia had warned us about the hills, but when looking at the profile it really didn't seem too bad. Just a few hundred feet here and there. Well it was more like "go down a few hundred feet then back up a few hundred feet and repeat that 50 times." Linda and Kelly actually did very well. Brian also did very well. But Andy got a little worn out. He didn't quit, and he didn't take any shortcuts (although he thought about it), but there was some walking involved. Like all of the last 20 hills. He felt like he rode 30 miles and walked 20. Andy and Brian took about seven hours to finish. The food was being packed up. Tents taken down. No more massages. No face painting. The Clydesdales were headed for the barn.

The donations are still being tallied, but this ride certainly raised over $100,000. That's a significant amount of research money for a disease like FA!

Thank you so much to everyone that has contributed to this cause! We might have a slight personal bias, but we really do feel strongly that this disease will be treatable in the near future and essentially cured. As great as the medical advances have been in the last 50 years, can you think of any diseases that have actually been cured recently? The cure for FA really is on the horizon!

We'll leave you with a few pictures (you can find more photos and thoughts on Kyle's blog and the FARA Facebook fan page). And with the words of Ron Bartek, the founder and president of FARA; words that those with FA live by...

"Acting alone, there is very little any of us can accomplish. Acting together, there is very little we will NOT accomplish!"













Friday, October 23, 2009

Ready for Ride Ataxia Philadelphia!

Well, maybe "ready" is a little strong. We're going though, ready or not. The bikes are loaded and we leave in the morning. Maybe we should have done some riding recently to get in shape for it, but how bad can it be? At least the weather sounds like it will be great. And the riders have raised over $40k now! Stay tuned!!!

Monday, October 19, 2009

Ride Ataxia - Philadelphia

For anyone still following us, we're doing Ride Ataxia Philadelphia this coming weekend! It's a one-day ride that's more of a "family adventure" sort of thing, with 10 mile, 25 mile, and 50 mile routes. Linda and Kelly will do 10 miles, and Andy and Brian are signed up for 25 miles (although they might switch to 50). This is the first East Coast Ride Ataxia, and the hope is that this will continue to spread in the coming years to be a larger event across the country. In fact Kyle has now left his engineering job and works for FARA full-time (Yeah Kyle!). So wish us luck! And hope for nice weather! Here's the link (we're Team Johnson): Ride Ataxia - Philadelphia

Thursday, March 19, 2009

Ride Ataxia III

Although we're not participating in the ride this year, many others are. The 2009 Ride Ataxia III has 70 riders and the fundraising has now reached $175,000! The team is doing a GREAT job, riding in four days from Portland, Oregon to Seattle, Washington in the pouring rain. sleet, and hail. This year the riders include FA patients, parents, researcher doctors, FARA employees, and even Outback Steakhouse employees. Read more about it at one (or all) of these places:

And a big thanks to Outback Steakhouse for their excellent support over the years, including providing all of the dinners for the ride this year and fundraising at their restaurants throughout the Northwest.

Way to go team!!!