Team FARA in the San Francisco Marathon

Good Luck to Mark Bruemmer and his team of 20 San Francisco area Outbackers. This marks the second year that this dedicated Team FARA running group will participate in a 5k and 1/2 marathon on behalf of FARA. If you find yourself in the San Francisco area on Sunday, July 25 please come out and cheer them on!



First it should be noted that this event has more rules than an Army boot camp. A couple of the rules that came into play for this story are: #650 Night Riding and Safety This was modified slightly before the race started when they changed the time that these rules would take effect each day. They moved the time from 8 pm local time to 7 pm local time. The rule in summary, says that the rider after 7 pm local time has to use full lights on his bike and must be in the headlights of the follow vehicle at all times. The biker and the follow vehicle are considered "one". Of course at 7 pm local time you still have to be wearing your sun glasses in most cases, so the rule seems a bit much at this time of day. The other rules #625 Sportsmanship and #640 Passing will become self explanatory as the story unfolds. A violation of any of the rules outlined in the RAAM rule book could result in a time penalty.

This all took place towards the end of Day 1. Day 1 was very chaotic in many ways and this just topped it off. The first 21.7 miles of the race no vehicles are allowed on the course. So we made the decision, screw it, we'll just make John ride the whole way and try to burn him out early. After the 21 mile mark we began our regular rider exchanges every 7 to 8 miles. Everyone, however, was looking forward to experiencing the "glass elevator" that we had heard so much about in the build up to the start of the race. The riders decided before the race to have John make this decent as they had hoped that he would be tired enough to control himself by this time of the evening. Here is the description from the Routebook: “Marked 8% downgrade "The Glass Elevator". Caution---dangerous descent.”

As we approached the crest of the descent we set up the follow vehicle I was driving with a member of the film crew. Kevin mounted his camera on the hood of our red van using some kind of suction cup device. I was a little skeptical that it would actually hold. One other thing to mention, the red van had major issues with the brakes. It seems the rotors were warped and at certain speeds (any speed) it would cause the whole van to shake when the brakes were applied. So thinking ahead we decided this would be the best vehicle to follow John down the "glass elevator" at high speeds.

We made the rider transfer about 1 mile prior to the crest. Unfortunately the transfer was made at 7:01pm local time. This meant I had to follow John at a distance of no more than 50 ft according to the rules. As we approached the descent we began to overtake a slower rider. When this happens, they are supposed to slow and allow the approaching rider to pass safely. See rules #625 & 640. Needless to say that didn't happen. John yelled back at me, "Can I Pass?" and I replied "When they let you". I didn't get the complete sentence out when John sprinted to the left and passed the other van and rider on the first blind hairpin turn of the descent. By the time I got around, crossing the double yellow, it took me at least a half mile to catch John who was cruising at 40 to 50 mph by that time. As I tried to follow through the twisting road, alternating between gas and bent rotors, I kept catching a glimpse of Kevin's camera chattering on the hood each time I touched the brakes. This pursuit lasted for 11 miles. As we sped into Borrego Springs for the rider transfer John was screaming joy. John later said it was the most fun he had ever had on a bike.

I do have to mention one more rule to end this story. We were told numerous times: riders can never reverse and ride back along the course. This can subject the team to disqualification. But as John was finishing the "best ride of his life" he decided to flip a u-turn and ride back to high five the crew. Fortunately, the official that was present missed that action and we continued with our rider transfer and the team continued on into the desert evening.

Mike B.


FA Moms!

On August 15, 2010, Louise and Sandy (parents with children who have FA) will participate in the Seattle Triathlon as part of Team FARA. 
What does Team FARA mean to us: 
Team FARA encourages us to push, step outside the comfort zone, reach and accomplish something for ourselves, and more importantly for the greater Friedreich’s Ataxia community.
Sandy's Story: 
My daughter was diagnosed at the age of 4 1/2 with FA.  FA is a life-shortening, debilitating, and rare neurogenetic disease.  Chelsea opens her eyes every morning confronted with new challenges and frustrations.
Chelsea is now blind and cannot do most activities that many of us take for granted, such as self-feeding, bathing, brushing her teeth, or dressing herself.  This disease has robbed Chelsea on her independence, her dignity and her pride.  Remarkably, despite the grim scenario painted above, Chelsea is cheerful, happy and loving.  This disease progresses with time and there is presently no treatment or cure. 
Anyone who has ever met Chelsea knows that she is lit from within.  She has a heavenly glow about her.  Chelsea is a dreamer and one day dreams of a cure.  We must keep the hopes and dreams of Chelsea, and all of those affected with FA alive by supporting research.  There is no longer any doubt – “Working alone, there is little any of us can accomplish.  Acting together, there is very little we will NOT accomplish.”  Ron Bartek, President and Founder, FARA. 
Please help is reach our goals and help Chelsea achieve her dream 
Louise's Story:
 In 1991, after 2 years of diagnostic testing, we were struck with the devastating news that our beautiful son Joshua, age 6, had FA.  Eighteen months later, our lovely daughter Leah was given the same diagnosis.  Last year at the young age of 23, our son passed away from cardiac failure.  Our daughter Leah, now 23, continues her brave battle as this debilitating disease continues to progress. She inspires me every day with her smile.  Our only hope is to find a cure for FA and our only way is thru research.  This year I am dedicating my training and completion of the Danskin Triathlon to Joshua’s memory.  You can support our cause by praying for a cure and by contributing financially (every penny helps) to FARA (Friedreichs Ataxia Research Alliance) via this website.  Together Everyone Achieves More.
To donate to these Moms of the FAmily please visit their fundraising site.

RAAM Race Recap

Team FARA was featured in a recent RAAM 2010 Race Recap:

"Team FARA raced to raise money and awareness for the genetic, neuromuscular disease, Friedreich's Ataxia. Two of the racers on the team, Kyle Bryant and Sean Baumstark suffer from the disease, which attacks the muscles and causes life-shortening heart disease. Kyle is further progressed and raced riding a specially designed tricycle. Although Kyle spends much of his time these days in a wheel chair, he is one of the spokespeople for FARA and his continued cycling and fundraising efforts have garnered roughly $1,000,000 for Ataxia research. Team FARA finished 1st in the division with a time of 8d7h59m (15.03 mph)."

Read the entire story here: RAAM 2010 Recap Part 2

However I think they may have been wrong about our finish time, I think it was 8d8h14m but either way we came in first in our division!


RAAM Reflections

The posts below are stories from the crew of Team FARA's Race Across America.  The posts are consolidated in the new tab above called "RAAM Reflections." Enjoy!

Snippet from the night

At a Time Station, we met up with the Aussie team again. They were a nice group. One of the guys said to us, “My Dad, rest his soul, would never believe that his son would be chasing 4 bike riders across the United States,taking directions from a woman's voice in a little box.”

Bob O.

Special Thanks Go Out to…

AAAHHHHHH!!!!....weren't those some crazy moments? And another great big shout of “THANK YOU!” to the absolutely wonderful lady that owns the little old fireplace salesroom way out in the middle of NOTHING ELSE OUT HERE, Kansas. She allowed me to occupy her tiny little toilet room in the back of the store with the see-through slotted boards for walls, the low low water pressure and the stress relief smell of good soap. Couldn't ask for anything more! And thanks to blake for filling her in on why we where out there. And thanks to big John Lockwood for continuing to peddle whilst I relieved myself.

Phil V.

Panicked relief

Taking care of No. 1 and No. 2 for the Crew required an unnatural combination of control and luck. Team FARA’s mentor, Lee “Fuzzy” Mitchell, did the math for us early on in the planning process and declared that the capacity of the RV could only accommodate the needs of the four Riders. The Crew would have to make do with whatever external facilities that they might encounter. For me and others, this more often meant everything from dashing behind the odd bush in the desert to offroad rock outcroppings, strategically placed guard rails but sometimes a gas station or convenience store would be encountered at just the right time. Locals who came out to see the passing spectacle of our Riders exchanges at the edge of their rural driveways were a rarer but most welcome event for the Crew.

Crew members were always grateful for these opportunities for relief whether natural or odd coincidence. In the more urban areas, this required both discretion and good judgment, but we appreciated the graciousness that we encountered. One memorable case occurred late in the Race as we approached the final stretches into Annapolis. The RV had settled in for brief stop to coordinate a rendezvous with the vans for the next exchange of resting for exhausted Riders. The RV pulled into an independent convenience store along the highway and I popped out to dash into the little store. The modest store was stacked to the ceiling with the usual water, beer and other beverages along with snacks. But a quick scan of the premises found no restroom. Ugh! The proprietor, a middle aged woman behind the counter recognized my dilemma immediately and with the sweep of her hand she said, “Please, use my bathroom” and she pointed toward a closed door marked: Private: Employees only.

With a quick thank you, I pushed open the door to a darkened room equipped with a small kitchen, a cot in the corner and an open door to a waiting toilet. I flipped on the light and closed the toilet door behind me. Ah!!! Relief of No. 2 and mission accomplished. I rose to flush the toilet only to see the water rise ever so slowly. And rise. And rise. With each millimeter of the rising tide, my relief was displaced by panic. Was I going to reward this gracious woman with a mess in her private facility?! At last the rising stopped and the water level receded to previous levels. But the contents of my deposit remained. Well maybe a second flush will do the job. A slow swirl and a rising tide removed only a fraction. This would not do. I grabbed the plumber’s “helper” next to the toilet and furiously plunged hoping to free a clogged line. A third flush and the slow swirl removed more of my deposit and only a fourth flush cleared the bowl.

Emerging from the Private quarters, I cautioned a fellow Crew mate – “Careful.” As I passed the store keeper, I expressed my thanks and she responded – “You are most welcome. I know that you have traveled so far. Many others in the Race have already stopped by. Sorry but it flushes very slowly.” Indeed!

Mike A.

Late night navigation

I had just come off an 8 hour shift and was sprinting for my favorite berth above the RV cab,when I noticed Mike Bryant in the darkened cab tapping his pen and looking at the next pull. I asked him who his navigator was and to my dismay he said he was driving and navigating himself. I hated the navigating part of this job, and when I saw that the entire page was highlighted in yellow I offered to drive, but Mike said he was driving. Just to let everyone know, Someone on the team, I think it was Felicia, took the time and highlighted every turn on every page of every RAAM rout book. Again I offered to drive, and Mike said no. Off we go into the stormy night with me navigating. The first turn was missed when we came to the stone wall, telling us we missed our turn. I think we were in Kansas, but I really don't know. Anyway we were both relieved when we came into radio range of our two vans and riders. We got to the next time station a McDonald’s where a RAAM official greeted us with a Doppler radar report of the front that was following us. His recommendation was to wait and let the storm pass, but that was never an option for our guys. We pressed on as usual.

The pressure of navigating was intense and I had been having bad dreams for months about getting the team lost, I never offered to do it again but actually would have done anything needed to "Finish Strong".

Bob O.


Foolkiller 2010

Hi Team FARA fans! We mentioned a few weeks ago that Team FARA is not only for cycling, the Team extends to anyone who wants to make progress for the meet Team Foolkiller:

"In September 2008, just before her 13th birthday, our daughter, sister, and friend, Grace, was diagnosed with Friedreich’s Ataxia (FA), a degenerative neurological disease for which there is presently no treatment or cure. The diagnosis came after several years of trying to find out what was causing Grace’s balance and gait problems. Finally, a genetic test at Mass General confirmed what the doctors suspected. The news was life-changing for each of us in the Hopkins family. We found out everything we could about FA, and none of what we learned was encouraging. We learned that Grace can expect to be in a wheelchair within a few years, gradually lose her abilities to move, speak and see and to develop a heart disease which is often fatal for FA-ers at a young age. We found out that FA is a very rare disease and is sort of like winning the multi-state lottery, as far as the odds go.

We learned some good things, however. We learned to have strength in our family and our faith. We learned that we have the best family, friends and neighbors one could hope for. We learned about the FA Parents Group, where we have met the most courageous and generous people God produces, and where we can share our experiences, joys and sorrows. And we learned about FARA – the Friedreich’s Ataxia Research Alliance – a group of far-seeing and dedicated folks who are providing real hope for FA-ers through funding some very promising research and treatment avenues, some of which are in clinical trial phase right now. FARA consists of FA-ers and their families and friends who together have put us on the road towards understanding and beating this disease. But it is a race – for Grace and for all FA-ers waiting for a treatment and, hopefully, a cure. That is why it is so important to help out at this time.

One of the ways we decided to help is through an idea my neighbor, Web Barrett, came up with. We had been hiking the White Mountains every summer for the past few years – Web, myself(Tom), Web’s son, Kyle, and Francis. We started with Mount Washington and have covered a few additional 4,000’ + peaks since. (Web’s done most of them already a few times over). This year, we decided to turn the climb into an opportunity to raise awareness and fund research for a cure for FA, by raising the FA banner over at least five 4,000’ peaks. We decide to name the climb the “FoolKiller 2010,” after one of the peaks. This year Clare will round out our five member Team FARA. Our five member team will be hiking 5-8 mountains, all over 4,000 feet, within five days and four nights.

You can help out with a generous tax-deductible donation to FARA, by clicking here:
Also, check out our other sites sites:

For more information on FA and FARA you can visit:"