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, 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.

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.

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

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!

SAG Crew

Another group that deserves some serious recognition is the SAG crew. We had tremendous support during the ride, and without that support, we never could have done it. Hotels, meals, snacks, drinks, and bathroom breaks were all taken care of by this great group of friends and family.

Let's start with Diane:
This is Kyle's mom, and she was the boss. She handled everything. She even got Twinkies for us! Here's the rig she drove around:

This is Sean's dad: He and Elaine drove a big fifth wheel for the whole ride:

It was perfect for lunch stops and bathroom breaks:


Wally and Mary drove a smaller rig (and pulled a car with it):
They often drove drag, making sure all of the stragglers (like us) kept on going:

Spinner's parents, Dave and Karen, drove a van along with the group also. They were the "route checkers," often driving ahead and making sure the route was all set. Funny how an occasional Navy base gets dropped right in the middle of our planned route!

For about the first half of the ride, Rich and Lee drove a SAG van and toted all of our things to the different hotels:

They did a super job, waiting on us hand and foot. We almost felt guilty with all of the work they were doing, but they didn't seem to mind. Lee is one of the most well-behaved kids we've ever met. He hung out in the van most of the time playing on the computer or a video game.

Here's a rare shot of Tim (on the right):

He is a friend of Bart's and showed up around when Rich and Lee had to leave, so he took their place. He pulled Bart's camper around and hauled our bags in that:


Debbie was another great SAG driver for a few days, although we don't seem to have any good pictures of her.

A huge thanks to ALL of the SAG crew! We certainly couldn't have made it without all of you! Maybe the Speedy Boys could have, but not us!!!


Cyclists

We've been remiss for not introducing the cyclists involved in this endeavor. With all the pedalling, it's been hard to find the time needed to properly give credit to these wonderful people. Here goes...

When we started at the capitol, there were over 50 riders! Some had ataxia, although most were friends and family of those affected.

Here's Kyle (in the middle), his dad (on the left) and Sean (on the right), giving everyone the starting pep talk, along with the appropriate safety information:

Kyle is the originator of this ride, starting it last year with Ride Ataxia I. His dad, Mike, rode with him last year and was very involved in the ride this year. Sean was just diagnosed with Friedreich's Ataxia last year. He met Kyle recently and helped significantly in organizing the ride this year. All three of them did the entire ride this year.

Once we got on the road, the large group began spreading out into smaller mini-teams, naturally separating the riders of different speeds. Of course, we fell right to the back, forming a group of people that were "enjoying themselves," not trying to set some kind of record. Here's our group, from left to right; Linda, David Henry (Spinner), Paul Konanz, and Angela. Andy took the picture.Spinner has Ataxia (a sporadic form), and stayed with our group during the entire journey. He rode about 400 miles last year with Kyle, and he was very patient to slow down with us and smell the roses. Paul is very active in the ataxia community; his daughter (Brianne) has Friedreich's Ataxia. He rode with us the first day and had so much fun that he returned for the last day as well. Angela is Kyle's cousin. She rode with us for four days.

Here's our group arriving at the campground at the end of the first day:

Here's Spinner. He's from Texas. Disregard the sign - he's one of the most friendly, patient, laid-back guys we've met. We very-much enjoyed his company and hope the feeling is mutual!

This is Angela, with her company's logo on her helmet (they helped sponsor her):

This is the Bryant clan. As in Kyle Bryant. From left to right, Neal and Libby (Kyle's uncle and aunt), Jina (Kyle's sister-in-law), Angela (Kyle's cousin who you've already met), Steve (Kyle's uncle), Dianne (Kyle's mother), Kyle, Mike (Kyle's father), and Collin (Kyle's brother). Neal and Libby rode about half the trip. Jina, Collin, Steve, Mike, and Kyle rode the entire trip. Dianne provided support (lots of it).

Here's Tess (with Linda), who became another one of our good friends. She lives in Sacramento and works (and is friends) with Kyle. She rode the entire trip, and was our roommate for a lot of it.

And now for the "Speedy Boys." This is Sean, Luke, Mike, and Travis:

All of these guys are friends of Sean's and rode the whole trip. Luke came all the way from Germany. Linda thought these guys were beautiful. Tess agreed. Some days the Speedy Boys would even wear matching outfits. Whether they did or not, they rode like a real bicycle team, staying in a line and drafting off each other. They'd leave long after we did, pass by us, and arrive at the hotel well before us. It was all good though - we don't hold their speed against them!

This is Collin (Kyle's brother), his wife Jina, and Uncle Steve:

All three of them rode the whole trip and were fun to be around! Steve is from Montana and has one or maybe two bionic knees. Collin and Jina are newlyweds living in California.

Bart arrived just in time to climb Tehachapi, and he rode the rest of the trip. Here he is introducing himself to the Speedy Boys, with the apparent hope of joining their team:

Beth Bax, her husband Eric, and her sister Edie joined us for one day, riding from Wasco to Bakersfield. Beth has Friedreich's Ataxia.

John rode with us the first day and the second half of the ride. He was a fit rider, and was always ahead of us somewhere. Another very friendly guy.


Amy, Tom, Sam, and Max joined us after Tehachapi. They drove all night from Seattle to meet up with us. Sam has Friedriech's Ataxia and just bought a trike about a month ago. They all did great and were a lot of fun. Unfortunately we don't have a good picture of them.

Here's the group of riders that rode in on the last day into Las Vegas.

There were plenty of other riders that joined us off and on, like Chuck, Lance, Susie, and more. Everyone was so friendly and fun, and we'll surely miss them all. Thanks to everyone, and GREAT JOB!!!

Sunday, March 30, 2008

Updated Posts

Andy writes:

We got home today! I just updated Day 12 and 13 with some photos, so reread them if you'd like. It's late and we're going to bed now, but stay tuned over the next few days while we do our final updates. And thanks to those who have boosted their donations now that they've seen we were actually able to do it!

Friday, March 28, 2008

Day 13 - Primm to Las Vegas, NV

Andy writes:

We did it! We almost can't believe it, but we did it! We're now in Las Vegas! We rode 39.2 miles today, and the whole team rode right down the Las Vegas strip and pulled in together at around noon. A huge group was there to greet us, champagne and all! And a TV crew. Check this out!

Here we are as we approached Las Vegas (you can actually see it in the background if you look hard):


Here we are at the end, celebrating (by the way, Kyle had instructed all of us to stop shaving until we got to Vegas, in case you're wondering what that stuff is on my face):



And here's the whole team (actually just the ones that rode the last day - there are a few others that did just earlier parts of the ride):


After riding all morning and arriving for the celebration at noon, we then attended a Leaders' Meeting from 1:00 to 5:00 (Linda's the leader of the Central New York support group) followed by a relaxing dinner.

My replaced tube rode fine today. So over the entire 649 miles, Linda had no flats and I had one. The team had around 40 to 50 flat tires - we feel very lucky!

Here are a few final trip stats:
  • Total distance: 649 miles
  • Elevation gain: 2,083 feet
  • Minimum elevation: 1.2 feet
  • Maximum elevation: 4,738 feet
  • Climbing distance: 230 miles
  • Climbing elevation: 16,259 feet
  • Descending distance: 234 miles
  • Descending elevation: 14,176 feet
Thanks to everyone for all the support and encouragement! We feel so blessed to have so many loving people behind us on this journey! Stay tuned for more updates about the whole team, the NAF conference, and other reflective thoughts. Thank you ALL!

Day 12 - Baker, CA to Primm, NV

Andy writes:

Once again this is a little late, but I'll try to catch up.

If you recall, we were quite concerned about the day's ride. A big hill, to say the least! The whole ride was on the freeway again. We got a nice early start, knowing it was going to be tough. But this time we came up with an excellent strategy to overcome the hill: iPods. Linda put on her iPod and started cranking up the hill. She did great! 35 miles up the hill and another 15 down the other side. Here's the profile, this time with my speed overlaid on it:


Not super-fast, but we did the whole thing with no big problems. Lunch wasn't until the top of the entire hill at about 33 miles, so that meant we really had to keep going all morning!

Here are the statistics:
Ride times: 7:37 to 3:42
Distance: 50.1 miles
Average moving speed: 8.3 MPH
Roadkill: none. But we did have some excitement with live animals. We saw four snakes. Collin and Jina also saw a nice rattlesnake right on the shoulder and had to stop to get around it. We couldn't identify the snakes we saw, although I almost ran right over one (my tires went right next to it and it picked up its head just as I went over). The best one was when Linda was in the zone... the weather was beautiful, big blue sky, mountains all around, and she was cranking Wide Open Spaces (Dixie Chicks) on the iPod. Lunch was just ahead, and the hill was almost behind us. She started slowly waving her arms in the air, totally at peace with the day, riding no-handed. Then she saw the coiled-up snake right in front of her! She grabbed the bars and jerked around it (almost going into traffic or flipping over) and screamed at the top of her lungs for the next minute or so! Pretty funny!

Here's the typical scenery:


Oh, and I had a flat tire IN THE HOTEL ROOM tonight! We rode over a lot of debris today, and a tiny little wire finally got me. I changed it right in the room so it's ready for tomorrow:

Tuesday, March 25, 2008

Day 11 - Calico to Baker, CA

Andy writes (while Linda sleeps):

No scorpions in our shoes this morning. That's good. We're totally into the desert now.

Today's Statistics:
Roadkill: just a simple mattress
Mileage: 56.2 miles
Average moving speed: 11.2 MPH
We've still not had a single flat tire, although others have been having them occasionally.

The ride today was all freeway (I-15). Wind at our backs again, wide shoulder, but a lot of highway traffic. For example:


We're getting a lot closer to Vegas now - yeah!!!


We made it to Baker, very tired again. Here's the giant thermometer in town:


"Uncle Bud", the brother of Linda's grandfather, and Louise came to town and gave us a nice visit. They took us to dinner at the local Greek restaurant - it was excellent. Thanks Uncle Bud!


And he took a quick spin on Linda's trike:

Tomorrow we reach Nevada. Unfortunately, it's going to be a very difficult day. As bad as the climb to Tehachapi, with another 15 miles afterwards. We're hoping for a serious tail-wind!

Day 10 - Boron to Calico, CA

Andy writes:

Fatigue is starting to set in. Another 55 miles done today. By the time we get in, get set up in a room, get cleaned up, and have dinner, we're often too tired to post - you'll notice this is a day late.

Here are the statistics:
Ride times: 8:19 to 3:02
Mileage: 55.5 miles
Average moving speed: 11.0 MPH
Roadkill: One cat and one television (an old CRT, for those of you who remember them).
Falls while pedals are clipped in: 1 - NOT ANDY THIS TIME!!! (poor Jina, right on the freeway with cars flying by right next to her)

We were on a divided highway most of the ride today. It seemed like a long day - not overly difficult, just tiring.

By the way, we went through the town of Hinkley, the town made famous by Erin Brockovich (we didn't fill up our water bottles there).

Here's last night's hotel room, with Linda on the computer. Note the beautiful table lamp from about forty years ago.

Our excellent lunch-time SAG crew and riders:

We were on Route 66 for a bunch of the ride:


We're spending the night at a bunkhouse in the Calico Ghost Town:



And finally, here's our great dinner of beans and hot dogs:

Sunday, March 23, 2008

Day 9 - Tehachapi to Boron, CA

Linda writes:

No rest for the weary. We thought going downhill would be easy, but with a very strong headwind, the windmills were spinning faster than we were!


50 miles later, 6 hours, a bit of windburn, and we were relaxing in front of our motel!

The Boron motel ... words cannot describe ...

Statistics:
Miles - 49.1 miles
Speed - 10.8 miles/hour
Cycling duration: 9:00 - 2:57
Road kill - pretty slim pickins' lately - just one phonograph player. Hoping for more action over the next couple of days!
Flat tires - 0 for the whole team!