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.

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 veteran White Mountains hiker.  We’d done some two to three day hikes the past few years, hitting a few 4,000 footers, including Washington, the big daddy of the Whites.  But these treks were scant preparation for what we’d bit off, though we did not know it till we got into it.  We wanted to do something with a bit of an edge to it – something that in some small way respected the incredible achievement of the Team FARA RAAM triumph, our source of inspiration - and which honored the courageous lives of all our FA-ers and families.

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 with tires balding worse than I am.  We hydroplaned, spun out and did a “360,” bouncing off a guard rail across traffic and into the breakdown lane.  About 40 minutes of standing in the rain waiting for the police and wrecker followed.  We were soaked before putting a foot to the mountain.  Left the ‘rango at a garage and piled into Web’s car, getting to our start point about two hours behind schedule.

Started out in the pouring rain, going up Mt. Liberty, with full packs – tents, gear and five days of food – about 40 pounds.  By the time we reached our camp just below the summit the rain had let up, but we had to scrap our plan to get to the summit of Mt. Flume the same date.  We raised the FARA banner over Liberty in a menacing sky with quick moving clouds that allowed just enough of a view of the surrounding mountains to get us pumped for the next day, Thursday.


And what a day – possibly the longest ever for some of us.  From Liberty to Little Haystack, Lincoln, Lafayette and Garfield.  This was mostly ridgeline hiking, where, if the weather is good, the views are spectacular, but if the weather is lousy, there is no place to hide.  Well, the weather got real lousy – sleet and freezing rain after we reached the ridge line.  The exposed wet granite cropping made the going very slow and treacherous.  Several hikers near us went down and stayed down.  With gear soaked and boots filled with water, we pressed on across the summits, the last portion of the hike from Lafayette to Garfield being the longest and most difficult leg of the trip, by far. 

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.  More than I care to even contemplate.

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. 

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

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!

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.

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 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/"

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?

A Complete Photo Album

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!

RAAM Media

I finally got a chance to scour the RAAM website for Team FARA sightings and found this:



Thank you to the RAAM media crew who was so good to us on the road.

I am still trying to wrap my head around this whole adventure.  I let it sit for a day and watched a slideshow of photos tonight and was very emotional.  I'm sad that it is over, but this is only the beginning for Team FARA.  Stay tuned. . . . .

Time to go home...

After a great race, the building of beautiful friendships, and celebrating with friends and family in our FA family...its time to fly back to sacramento! Thank you all for the adventure of a lifetime!
Until the next great adventure...boomslam!
Sent from my Verizon Wireless BlackBerry

'Cause Sometimes One T Just Ain't Enough

Go Team FARA

Let the man speak

RAAM Banquet

RAAM Victory Banquet!

Deconstruction

Who knows who this stuff is? Let the sorting begin!

Finish

The Finish!

The Finish

Finished

Boomslam!

7 miles left in raam

Web cam I think at the finish! Raceacrossamerica.org for the cam

Countdown Begins

Heading into the finish

Kyle & I in FARA Van 1 - sometimes known as goldie locks, gold van, sandpiper, golden nugget, saharah blaster, mean machine, and so on...
Approaching our final 10 miles!

Check out www.raceacrossamerica.org for the live video stream of our finish in Annapolis!
Sent from my Verizon Wireless BlackBerry

Heading into the finish

Kyle & I in FARA Van 1 - sometimes known as goldie locks, gold van, sandpiper, golden nugget, saharah blaster, mean machine, and so on...
Approaching our final 10 miles!

Check out www.raceacrossamerica.org for the live video stream of our finish in Annapolis!
Sent from my Verizon Wireless BlackBerry

Raam finish webcam

Raceacrossamerica.org has a webcam set up at the finishline we should
be crossing at around 1:27 east coast time... Will try to update with
a better time estimate the closer we get... 50 miles out!

Finish Strong

Page 146 contains the Special Instructions for Finish - 91.2 miles to
go. All 4 riders will ride the final 54.6 miles together from Mount
Airy, MD to Annapolis...may I suggest you join them?

Gettysburg

Mike B is at the helm on this beautiful evening as we cruise through
Gettysburg while the riders battle a few miles behind us. If that
doesn't paint the picture for you, see the photo.

Final push

I realize the posts are getting less frequent but we are making the
final push. We have slowed down a bit in the rolling hills of
Pennsylvania. John and I just finished our toughest shift of the
entire trip and Sean and Mike are out battling the hills right now.
140 miles to go!

Sunrise climb

Top of a tough climb followed by a signature John Lockwood screamin'
descent in West Virginia.

Almost there!

The Journey & the Friends You Take with You

Someone on the crew (I think it was Diane) remarked how grateful she was for the members of our crew that joined because they had a connection to FA through a friend. We draw a lot of parallels between the kind of terrain passed on this journey and a family's life with FA. Many times, I imagine, it is the uphill climb like the team is traveling now---where you just need to put your head down and keep turning the crank. Other times, I'd think, it is like the loneliness of the dark and rainy night on a quiet Ohio country road. And others like the wind blowing you sideways as you try to move forward as in the open Kansas plains. But still our FA families and our team press on---knowing that it isn't necessarily the terrain but who you take with you and who you meet along the way that matters. Thank you to the friends and siblings in our crew---Blake, Mike G, Tracy, Aaron, Steve, and Phil. You joined the team simply because you love someone with FA. You've followed behind our cyclists lighting their way in the dark, feeding them between shifts, monitoring their progress and watching out for them. They've made this journey because you were either behind them or at their side. A special thank you to our cyclists Mike and John who came to this journey because of their friendship with Sean and Kyle. Your commitment to your friends and to the FA community has touched the hearts of so many.

And an added Happy Father's Day to Phil who is spending it on the road with the team and away from his little girls in CA. Thanks Phil.

Keith Michael Andrus, 12/21/1985 - 1/22/2010

Team FARA Riders and Crew dedicate our last day of riding to Keith Michael Andrus.


Keith's diagnosis of Friedreich's ataxia at age 11, inspired his parents, Raychel and Ron Bartek, to join him in his fight, and found FARA. Even during the final and very challenging months of Keith's life he courageously continued to not only advocate for himself but for others with FA as he left no stone unturned exploring advanced and experimental treatment options. Keith’s legacy and inspiration lives on in Team FARA, pushing us forward, deepening our commitment and giving us a urgency.

We often quote Ron as saying, "Acting alone there is little any of us can accomplish whereas acting together there is little we will not accomplish." These words are deeply rooted in the FARA culture- the way we pursue treatments and a cure for FA and today as we complete this amazing journey, Keith is with us.

Happy Father's Day!

Happy Father's Day to the FA Dads on the Team FARA crew- Paul Konanz, Mike Andresen, Bob O'Neil and Mike Bryant. Thank you for trading in a quiet Father's Day at home to be on the road keeping our cyclists safe and moving towards the finish line. Thank you Paul- our RV captain and fixer of all RV things broken (generators, toilets, etc). Thank you Mike A. for all of the research on the rules, route, elevation profiles, temperatures, and cell coverage. Your detail management made us feel more in the know and less like a rookie crew. Thank you Bob for all the time spent preparing the vehicles and countless driving hours over the last week. And thank you to Mike B.- our crew chief -for taking on the enormous responsibility of leading four cyclists and twelve crew on this incredible cross country journey all because your son asked you to.

Thank you FA Dads. You monitored and followed our cyclists through sun and rain, light and darkness, mountains and windy plains. You did it on compromised sleep time and under stressful conditions. You did it because you love your kid and wanted to honor him/her with this service to the greater FA community. With the utmost respect-- Thank you.

And Happy Father's Day to my own Dad. Thanks for teaching me that there is nothing better than being a member of a team that has a worthy purpose.

West Virginia

We have arrived in west Virginia start of the east coast mountain
range... Three states to go!!! Yippi!!!

Mikes sorry

He texted me this picture when he got me lost yesterday and I had to
ride 9 miles In 97 degree heat 50% humidity... I forgave him... Who
can resist that puppy dog face, lol

Healthy Break

Team FARA riders and crew have been working nonstop for 7 days now. We
have been kicking butt and had a rough, wet night last night so we
took 2 hours this afternoon to regroup and make the final push for the
finish. We reflected on the past week and we are all overehelmingly
proud of how far we have come but we realize that we are not done yet.

We just got back on the road more focused than ever with our sights
set on the finish line.

Predicted Time Station Arrivals Update

Approaching Athens, OH! Use this link to view Predicted Time Station Arrivals and check our progress on the RAAM map. This should help since the GPS tracking linked on our blog is currently not signaling. Less than 500 miles to go!

http://www.raceacrossamerica.org/raam/rcfrcast.php?s_N_Entry_IDx=2618&s_N_Year_ID=33

Upgrade

When a sixteen ounce water bottle just ain't enough.

Join TEAM FARA

Team FARA is not just this team or this race, it is a greater effort with many participants all with similar goal to stay fit, challenge yourself, raise awareness for Friedreich's Ataxia (FA) and support FA research.

Join TEAM FARA!


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.

About Team FARA

Team FARA is made up of people around the globe who participate in endurance events on behalf of the Friedreich's Ataxia Research Alliance (FARA) with the goal of raising awareness and funds for FA research. Past Team FARA members have registered as individuals and groups in local marathons, ½ marathons, triathlons, ironman competitions, bike tours and 5K runs. With the FARA name in their fundraising materials, local press releases, and on their race jerseys, Team FARA members are introducing the general public to this rare disease and the importance of supporting FA research.

Join Team FARA

You can join Team FARA simply by registering in a local athletic event of your choice and deciding to do so in FARA's name. FARA will provide a fundraising webpage for you to customize with a photo and information about your event participation. FARA will also work with you to generate a press release and a strategy for local press coverage of your endurance event and campaign for FA research. Finally, FARA will supply you with either a Team FARA running jersey or t-shirt to be worn at your event. Your supporters also have the opportunity to purchase Team FARA t-shirts to wear as they cheer you on.

If you're interested in joining Team FARA, please contact us at info@cureFA.org

If you are looking for an event, join me at Ride Ataxia Philadelphia, 10/10/10. This is a great event with distances for all levels of riders.
Most importantly, Get out there and Educate, Empower and Enable!

Blanchester

Blanchester, Ohio....we're not positive where these signs came from, but we appreciate them nonetheless!! Maybe that support ran out of waiting time? Who knows. Thank you secret operatives of Blanchester!
Sent from my Verizon Wireless BlackBerry

Good morning!

After a night of battling a serious downpour the sun rises again and
the next shift looks to face another wet storm headed our way.

Saturday Challenge

At the beginning of the ride Kyle announced a goal of 1000 visits to the blog in a single day. We have gotten close... we have 920 visits in a day and we have had >2600 unique visitors but we have not had 1000 visits in a day.

As the team races through Ohio and West Virginia on Saturday lets see if we can get people to give up their chores and check out the blog.

Goal: 1000 visits to the blog on Saturday!

Hometown Friends

Emily and family drive 4 hours just to show their support on a random
Indiana road. Emily and I went to highschool together and I am good
friends with her brother Matt. Thanks for the support!

Mike as McGyver

So...we've managed to collect about 87 live, annoying, pesky flies in this RV, but for some reason its been impossible to get fly traps that meet some of the crews' "safe chemicals" standards, or even a fly-swatter. These stupid flies keep us awake when they consistently land on our faces! But fear no longer team & crew, Racer Mike has improvised and made 6 fly traps of his own! In your face flies!

Sent from my Verizon Wireless BlackBerry

Mike as McGyver

So...we've managed to collect about 87 live, annoying, pesky flies in this RV, but for some reason its been impossible to get fly traps that meet some of the crews' "safe chemicals" standards, or even a fly-swatter. These stupid flies keep us awake when they consistently land on our faces! But fear no longer team & crew, Racer Mike has improvised and made 6 fly traps of his own! In your face flies!

Sent from my Verizon Wireless BlackBerry

It is all about the mission!

I am so excited by the number of people we have had visiting the blog and spreading the word on Facebook. We wanted to do RAAM to raise awareness and educate people about Friedreich's ataxia and FARA's mission to bring treatments forwarded even faster.

What is Friedreich's Ataxia (FA)?
Friedreich's Ataxia is a progressive, neurodegenerative condition that dramatically, unexpectedly alters lives causing:
*Loss of coordination and muscle weakness in the arms and legs
*Energy deprivation/fatigue
*Vision impairment, hearing loss, and slurred speech
*Agressive scoliosis
*Diabetes
*Life-shortening cardiac disease

What is FARA?
The Friedreich's Ataxia Research Allianceis a non-profit organization dedicated to curing Friedrech’s ataxia (FA) through research. FARA grants and activities provide support for basic and translational FA research, pharmaceutical/ biotech drug development, clinical trials, and scientific conferences. FARA also serves as a catalyst, between the public and scientific community, to create worldwide exchanges of information that drive medical advances.

Today, individuals with FA are hopeful due to significant research breakthroughs that FARA has helped facilitate over the last decade. We are now in the "treatment era" as clinical trials are in progress. Each day, the FARA scientific community moves closer to realizing our goal of slowing, stopping, reversing and ultimately curing FA. Freedom from the debilitating, devastating effects of FA is on the horizon.

Learn more about FA, FARA and the research progress at:
http://www.curefa.org/

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

Back to the road!

We just surpassed the distance, in 6 days, that the pro competitors in Tour de France do in 3 weeks!

Redbull it up!

Right now we are all wishing for some wings!!!

Dedication

Team FARA riders and crew are constantly trying to catch some z's.

Day 6

Mike's only pair of clean socks.

Yet another transition

Transitions keep happening, different times different places... It
kinda like life always adapting to situations and circumstances but
the main thing is that not all transitions are smooth sometimes they
don't go exactly as planned but if you push hard you will reach the
finish! Oh and just for the record I think the crew has our
transitions down to a science now... Haha it was a little rough going
in the beginning lol! Like when john left the transition area even
though the other ride hadn't made it there yet, we got the
comunication going now though!!!

Bubbles

You know it's a good morning when tracy busts out the bubbles while we
are leapfrogging... Good thing cause I needed a pick-me-up this morning!

Good morning!!!

Missississississississississippi

We have made it to
The Mississippi!