Team FARA members are running, walking, biking and swimming for FA research around the world. While they are geographically dispersed, Team FARA is united with the same goal: to draw attention to FA through acts of physical endurance and to support the advancement of FA research towards treatments and a cure for FA.
21.1.12
Tour De Palm Springs Sponsor: Lazy Dog Cafe
Lazy Dog Cafe is a relentless supporter of FARA and we are proud to have them as our Tshirt sponsor for Tour de Palm Springs. Visit one of their Southern California locations and show them the support they are showing for Team FARA! lazydogcafe.com
16.12.11
Tour De Palm Springs Sponsor
Three Olives Vodka is a huge supporter of FA Research and we are proud to have them as our Jersey sponsor in Tour De Palm Springs.
8.12.11
Tour De Palm Springs Hotels
Here is a list of hotels that will be offering a discounted group rate for Team FARA participants. Book now, the hotels will fill up fast!
Hilton Palm Springs
400 East Tahquitz Canyon Way
Group Name: FAR
Palm Springs, CA 92262-6605
$150.00 – Standard King/or Double Queen
$180.00 – Plaza Suite
Reservations should be made by calling the hotel directly and by using the group name.
760-320-6868
760-318-8501
Doral Palm Springs
67-967 Vista Chino
Cathedral City, CA
Group Name: FARA – Tour de Palm Springs
$139.00 – Run of House
Reservations should be made by calling the hotel directly and by using the group name.
760-322-7000
Shilo Inns Suites Hotels
1875 N. Palm Canyon Dr.
Palm Springs, CA 92262
Group Name: FARA
$119.00 – Standard King/or Double Queen
Reservations should be made by calling the hotel directly by using the group name.
760-320-7676
Quality Inn & Suites
69151 E. Palm Canyon Dr.
Cathedral City, CA 92234
Group Name: FARA
$79.00-89.00
Reservations should be made by calling the hotel directly by using the group name.
760-324-5939
Hilton Palm Springs
400 East Tahquitz Canyon Way
Group Name: FAR
Palm Springs, CA 92262-6605
$150.00 – Standard King/or Double Queen
$180.00 – Plaza Suite
Reservations should be made by calling the hotel directly and by using the group name.
760-320-6868
760-318-8501
Doral Palm Springs
67-967 Vista Chino
Cathedral City, CA
Group Name: FARA – Tour de Palm Springs
$139.00 – Run of House
Reservations should be made by calling the hotel directly and by using the group name.
760-322-7000
Shilo Inns Suites Hotels
1875 N. Palm Canyon Dr.
Palm Springs, CA 92262
Group Name: FARA
$119.00 – Standard King/or Double Queen
Reservations should be made by calling the hotel directly by using the group name.
760-320-7676
Quality Inn & Suites
69151 E. Palm Canyon Dr.
Cathedral City, CA 92234
Group Name: FARA
$79.00-89.00
Reservations should be made by calling the hotel directly by using the group name.
760-324-5939
14.11.11
Team FARA in Tour De Palm Springs
Jersey Sponsor:
"I believe the greatest challenges and struggles bring out our greatest strengths and accomplishments...My goal for my Team FARA ride in the Tour de Palm springs is to complete the second century of my cycling career. 100 miles in a day! Please join me by not only going after your own personal best, but by making an impact in joining the biggest Team FARA event yet to kick off 2012." - Kyle Bryant =>>Read Kyle's entire letter to participants HERE.
Team FARA is partnering with Outback Steakhouse to assemble a group of bike riding, research supporting athletes to participate in the Tour De Palm Springs on February 11, 2012. The Tour De Palm Springs is among the largest organized rides in the country and it offers 5, 10, 25, 56, and 100 mile routes to allow a fun and challenging ride for all abilities. The prime cycling conditions attract thousands of riders to this Southern California oasis every year making it an ideal ride to show the power of Team FARA among the masses.Each team member will receive a team tshirt and entry into 2 team gatherings hosted by Outback Steakhouse when they reach their fundraising minimum.
There are two main goals for Team FARA’s Participation in this event:
- Draw attention to Team FARA by showing up in huge numbers as a unified Team, turning heads in our flashy Team jerseys.
- Raise the money that will Cure FA.
Registration
You will register with Tour De Palm Springs on their website: http://tourdepalmsprings.com/node/11
Fees:
5 mile - Under 18: $10, Over 18: $25
10 mile - Under 18: $10, Over 18: $25
25 mile – Under 18: $30, Over 18: $40
56 mile – Under 18: $45, Over 18: $55
100 mile – Under 18: $50, Over 18: $60
Fundraising
Your registration fee goes to Tour De Palm Springs. Fundraising benefits FARA and requires a separate brief registration process to set up your online personal fundraising page with a picture and your story about the reason you are riding for Team FARA in this ride. After you set up your page you can send the link out to friends, family, coworkers and you can post your link on Facebook and Twitter to rally your troops in support of your ride for Team FARA in the Tour De Palm Springs. Sign up for your fundraising page here: Team FARA in Tour De Palm Springs. Click the button to the top left that says “Register.”
Team Apparel
One of the goals of this event is to make an impact by riding as a strong team in one of the largest events in the country. Each participant will receive a Team FARA/Ride Ataxia t-shirt and awareness bracelet when they sign up for their fundraising page and raise a minimum of $100. Your FARA awareness bracelet will get you in to the pre and post ride team gatherings hosted by Outback Steakhouse.
Jerseys
Each Team member has the opportunity to earn an official Ride Ataxia Jersey for raising $500 or more on their fundraising page. These jerseys were designed after the Jerseys worn by Team FARA in Race Across America - a race in which the 4 man team completed 3,000 miles across the country in 8 days 8 hours and 14 minutes. Watch the trailer for the upcoming documentary HERE.
Friday February 10, 2012
- 12:00-7:00pm- Tour De Palm Springs Expo and Information Pick-Up
- 3:00 to 5:00pm – Team FARA Pre-Ride Packet Pickup and Hors d’ouvres hosted by Outback Steakhouse
Saturday February 11, 2012
- 630am - 3pm - Tour De Palm Springs!
- 630 – 800am 100 mile staggered start
- 900 – 1000am 55 mile staggered start
- 1030am 25 mile Start
- 1100am 10 mile start
- 1130am 5 mile start
- 4:00- 6:00pm Team FARA Dinner hosted by Outback Steakhouse http://www.threeolives.com/
15.10.10
Go FARAmones!
“Joanna can’t even walk, and we can do this!” he said. “We could’ve made speeches or handed out flyers about FA. But instead we thought ‘let’s realize how lucky we are to have control over these legs and use them to their full potential.’ That will really send a message.”
Check out the full article HERE.
Check out the full article HERE.
7.9.10
Foolkiller 2010 Complete!
This is the story of the Team FARA Foolkiller climb as told by FA parent Tom Hopkins. If you'd like, here's a little background http://teamfara.blogspot.com/2010/07/foolkiller-2010.html
Now, on with the post:
One of the ways we decided to contribute to Team FARA 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.
I think none of us realized what we were getting ourselves into. Even Web. And he’s a veteranWhite Mountains hiker. We’d done some two to three day hikes the past few years, hitting a few 4,000 footers, including Washington
Started out in the pouring rain, going up Mt. Liberty Mt. Flume the same date. We raised the FARA banner over Liberty
And what a day – possibly the longest ever for some of us. FromLiberty to Little Haystack, Lincoln , Lafayette and Garfield Lafayette to Garfield
Now, on with the post:
One of the ways we decided to contribute to Team FARA 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.
I think none of us realized what we were getting ourselves into. Even Web. And he’s a veteran
It was preceded with signs that I now realize I should have more carefully read – starting with the weather report. One of the driest New England summers in memory was about to get very wet. Then my son, Francis’ persistent cough, diagnosed as pneumonia two days before our start date, caused his reluctant withdrawal.
On start day – Wednesday – we headed up in two vehicles, with a plan to drop one at the end point of the hike. Turns out we dropped it a bit earlier than planned – in the middle of Interstate 93. I was driving my 10 year old Durango
And what a day – possibly the longest ever for some of us. From
The extremely difficult terrain, the fatigue, the pain, the cold, the rain and the thought of three more days of the same played with our minds. We hiked for a good while in silence, each bearing his own private burden. As we learned from one another later, our thoughts at this time were often on our FA-ers and families, who confront difficulties and hardships and personal challenges on a daily basis and who persevere with resolve and courage. Amazingly, it was at this low point that the “Team” in Team FARA really came into play. Near exhaustion, Clare and I struggled far behind Web and Kyle who went ahead to try to secure shelter for the night. As we both neared what we thought to be the end of our endurance, Web came back down the mountain to us to announce that he had reached the summit, and to take my pack up the remaining distance. I took Clare’s and the three of us hiked with renewed determination to the top of Garfield, where Kyle was waiting, and unfurled the FARA banner in the icy winds.
We reached a shelter just after dark, cold, wet and tired. We got right into our sleeping bags without supper, paying little attention to the snoring hikers and busy mice who shared our lean-to. We’d raised the FARA banner over four additional 4,000 footers.
We slept in the next day, Friday, dried out our wet gear in the sunshine that finally came, got some food into us and revived our bodies and spirits. We had some good company in the shelter. You meet the most extraordinary people 5,000 feet in the air. Some of them are “through hikers” – going the entire distance of the AT (Appalachian Trail) from Georgia to Maine
Saturday we started out early after breakfast, rested and dry. The hiking was even more extreme, with steep downhills and uphills requiring all four “points” (hands and feet) at times, but it was dry and much more agreeable than Thursday’s ordeal. The views were spectacular. We hit two more 4,000 footers – Galehead and South Twin. We raised the FARA banner over each, and drew a good deal of curiosity and encouragement from the hikers who were out on the sunny weekend. We directed them to the FARA website.
On Sunday, we hiked out, hitting the summits of Guyot and Zealand – making a total of nine 4,000 + peaks. Web took the hiker’s shuttle to his car and came back to pick us up - with cold Mountain Dews for Clare and Kyle and cold Budweisers for me and himself. Tasted real good.
13.8.10
Team FARA in the Seattle Triathlon
Good luck to Louise and Sandy, FA moms who will participate in the Seattle Triathlon as part of Team FARA this weekend. Full story: http://teamfara.blogspot.com/2010/07/fa-moms.html
23.7.10
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!
16.7.10
GLASS ELEVATOR
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.
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.
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.
15.7.10
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.
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!
"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!
8.7.10
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.
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.
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.
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.
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.
6.7.10
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 cause...so 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.
TO DONATE:
You can help out with a generous tax-deductible donation to FARA, by clicking here:
https://sna.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/teamfara/team.do?participationRef=968.0.194552948
Also, check out our other sites sites:
http://www.facebook.com/event.php?eid=135470533148091
http://sites.google.com/site/teamfarafoolkiller2010/home/grace
For more information on FA and FARA you can visit: http://www.curefa.org/"
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.
TO DONATE:
You can help out with a generous tax-deductible donation to FARA, by clicking here:
https://sna.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/teamfara/team.do?participationRef=968.0.194552948
Also, check out our other sites sites:
http://www.facebook.com/event.php?eid=135470533148091
http://sites.google.com/site/teamfarafoolkiller2010/home/grace
For more information on FA and FARA you can visit: http://www.curefa.org/"
25.6.10
A Long Winded Conclusion
Dear team FARA (and the FA community) - you are amazing.
I joined Team FARA because I am terribly vulnerable to Kyle's sales pitches. Upon arriving in Oceanside, I will now admit, I had no idea what I had gotten myself into. Other than what the title implies, the Race Across America was a mystery to me; turns out, this was a good thing. As the race rules, crew rotations & required equipment were revealed, I found myself questioning the sanity of the riders and the crew I was about to join on this journey (especially that of Sheriff Gore).
(crazy right?)
Along the course of this ride, we traveled 3,000 miles through 12 states in just over 200 hours. We hoisted the bikes/trikes on to their respective racks over 500 times. We consumed hundreds of sandwiches & wraps (although surprisingly only one PBJ wrap) and drank enough caffeine to at least accommodate the morning rush at your local Starbucks (perhaps Tracy can back me up on this one). We experienced rural America at the comfortable speed of 15.1 MPH, although we would have liked to pick this pace up a bit in Kansas (only joking Kansas - your sunsets and Buffalo meat alone were worth the journey). We encountered an assortment of weather: hot, cold, humid, rain, lightning and wind to name a few.
(see what I'm talking about - Kansas is what's happening)
The crew was unphased by sleep deprivation, hilarious comments from navigators or annoyingly late camera guys - keeping the riders safe at all times and only seldom leading them off course (sorry Sean Baum). The RV, despite its overstuffed nature (both human and let's just say "crap") was at all times a sanctuary - all the credit in the world to Diane, Tracy & Paul. The riders were an inspiration, waking up only four hours after their last shift to go do it again, almost always (exception, Sean Baum) with a smile on their face.
Unlike most teams, Team FARA gained momentum throughout the race. The supporters that drove for hours to cheer us on, gave us inspiration. The letters provided by Mary lifted us up. And the bonds that we developed with our fellow crew members gave us even more reason to be there. While I signed up for this trip to support my friend Kyle, by the third day I realized all that I was fighting for: Mary and her daughters, Mike & Diane, Felicia, Sean, Bob, Steve & Erin, Paul, Mike A, Sheriff Gore & Sam, Phil, Aaron, Deputy Lockwood, Mike M & Tracy; for supporters along the way and those awaiting our arrival at the finish; for those checking the blog on a daily basis; for hope. I wasn't the only one subject to this infectious force. We were joined by a camera crew, which through countless hours of driving behind four inspirational riders, saw their passion for a film grow into passion for a cause. It is only through their commitment (and repeated acts of God), that their beater RV (Rainbow Fox) made it across the country...now I wonder if it will make it back.
To my friend Kyle: you are amazing. After every pull as I would help lift you out of the trike - I pondered how many people you were helping to lift up in some way (myself included). I know you are inspired by those supporting you; but you will never know how much inspiration you provide. Suffice to say, you are the world's smallest Barney (but a Barney nevertheless). I will follow you, wherever you may go (just steer clear of Kansas in the future). I love you, man.
Lastly (yes, this should indicate I'm almost done here), I must comment on Team FARA's #1 finish. Because the other team in our division did not finish, we took first place and were quite literally the only team in our division. I find this fitting because there really was no other team like us in the Race Across America. A group of rookies, most of whom have little to no cycling experience (riders excepted), decide to join one borderline lunatic on a journey that even he would admit was crazy...Team FARA for short. Looking at what we accomplished, with a supporting cast of hundreds of amazing people - is it really that crazy to think that we could cure FA?
I joined Team FARA because I am terribly vulnerable to Kyle's sales pitches. Upon arriving in Oceanside, I will now admit, I had no idea what I had gotten myself into. Other than what the title implies, the Race Across America was a mystery to me; turns out, this was a good thing. As the race rules, crew rotations & required equipment were revealed, I found myself questioning the sanity of the riders and the crew I was about to join on this journey (especially that of Sheriff Gore).
(crazy right?)
Along the course of this ride, we traveled 3,000 miles through 12 states in just over 200 hours. We hoisted the bikes/trikes on to their respective racks over 500 times. We consumed hundreds of sandwiches & wraps (although surprisingly only one PBJ wrap) and drank enough caffeine to at least accommodate the morning rush at your local Starbucks (perhaps Tracy can back me up on this one). We experienced rural America at the comfortable speed of 15.1 MPH, although we would have liked to pick this pace up a bit in Kansas (only joking Kansas - your sunsets and Buffalo meat alone were worth the journey). We encountered an assortment of weather: hot, cold, humid, rain, lightning and wind to name a few.
(see what I'm talking about - Kansas is what's happening)
The crew was unphased by sleep deprivation, hilarious comments from navigators or annoyingly late camera guys - keeping the riders safe at all times and only seldom leading them off course (sorry Sean Baum). The RV, despite its overstuffed nature (both human and let's just say "crap") was at all times a sanctuary - all the credit in the world to Diane, Tracy & Paul. The riders were an inspiration, waking up only four hours after their last shift to go do it again, almost always (exception, Sean Baum) with a smile on their face.
Unlike most teams, Team FARA gained momentum throughout the race. The supporters that drove for hours to cheer us on, gave us inspiration. The letters provided by Mary lifted us up. And the bonds that we developed with our fellow crew members gave us even more reason to be there. While I signed up for this trip to support my friend Kyle, by the third day I realized all that I was fighting for: Mary and her daughters, Mike & Diane, Felicia, Sean, Bob, Steve & Erin, Paul, Mike A, Sheriff Gore & Sam, Phil, Aaron, Deputy Lockwood, Mike M & Tracy; for supporters along the way and those awaiting our arrival at the finish; for those checking the blog on a daily basis; for hope. I wasn't the only one subject to this infectious force. We were joined by a camera crew, which through countless hours of driving behind four inspirational riders, saw their passion for a film grow into passion for a cause. It is only through their commitment (and repeated acts of God), that their beater RV (Rainbow Fox) made it across the country...now I wonder if it will make it back.
To my friend Kyle: you are amazing. After every pull as I would help lift you out of the trike - I pondered how many people you were helping to lift up in some way (myself included). I know you are inspired by those supporting you; but you will never know how much inspiration you provide. Suffice to say, you are the world's smallest Barney (but a Barney nevertheless). I will follow you, wherever you may go (just steer clear of Kansas in the future). I love you, man.
Lastly (yes, this should indicate I'm almost done here), I must comment on Team FARA's #1 finish. Because the other team in our division did not finish, we took first place and were quite literally the only team in our division. I find this fitting because there really was no other team like us in the Race Across America. A group of rookies, most of whom have little to no cycling experience (riders excepted), decide to join one borderline lunatic on a journey that even he would admit was crazy...Team FARA for short. Looking at what we accomplished, with a supporting cast of hundreds of amazing people - is it really that crazy to think that we could cure FA?
John Loves Powdered Donuts!
A little more research on the RAAM website lead me to this video. That's John eating the powdered donut near the beginning!
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