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!"

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!!!

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

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:

• Ride Ataxia website
• Track the riders
• Kyle's blog
• Paul's blog
• Mary's blog

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!!!

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.

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.

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

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!!!