the Brazilans are now a distant memory...we'll see who we can take out
next. John brought us in to Arizona, where RAAM has been experiencing
some problems with the local law enforcement - but there's a new
Sheriff in town.
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.
13.6.10
Sun is up - the sky is blue
the Brazilans are now a distant memory...we'll see who we can take out
next. John brought us in to Arizona, where RAAM has been experiencing
some problems with the local law enforcement - but there's a new
Sheriff in town.
A Note From The Crew. . .
First, we are so proud of our Team FARA cyclists for such a strong start. Mary & I last saw Sean and Mike at an exchange near Time station #2 in Brawley, CA. They should be tucked into bed for some well deserved rest by now, and Kyle and John pedaling away on 78 on their way to Blythe, CA.
They are accompanied by Crew Chief- Mike Bryant (Kyle's Dad), Phil Vickers (Sean's Brother), Blake Andrews (Kyle's friend), and Mike Gore (Sam Bridgman's friend). The crew makes sure the riders are protected from traffic, that their path is well lit, that they know which direction to travel, are well fed and hydrated, and that the transitions between riders is safe and within the rules. Everyone is decked out in stylin reflective gear and headlamps. (When we get a good photo of the crew in their gear, we'll post it.) Most of this crew has worked back to back shifts (ie on the road since the start)---and they retire for the evening at 4am and a new shift begins. The RV was manned by Stephen Parsons (Erin's O'Neil's friend) and Bob O'Neil (Erin O'Neil's Dad) on the first shift. Steve masterfully navigated some curvy, narrow and hilly terrain to get to the meet up point with the riders back in Borego Springs. Paul Konanz (Brianne Konanz's Dad) and Tracy Allgeier (Mike Mellott's friend) are at the helm of the RV now-----finding quiet places to pull the RV off the road so resting riders and crew can get some sleep. They juggle that with the need to stay ahead of the riders on the road. Diane Bryant (Kyle's Mom) and Aaron Farley (Kyle's Roommate) have had the food prep shifts--keeping the fridge well stocked with sandwiches and making sure the riders eat. Mike Andresen (FA parent), drove one of the rider follow vehicles at the start. Mike meticulously researched the Day 1 route for the team to ensure that the riders were well informed of the challenges of this route---and planned their coverage accordingly. Mary and I spent the late evening attempting to chase down our first "go for" run. The mandatory safety flags on our two follow vans got pretty beat up over the first 80 miles---so we went in search of replacements. We struck out at Home Depot---and with most stores closing by 9pm we decided to make our way up the course to put us in closer position to the team tomorrow morning as well as possible safety flag suppliers like Walmart or Sears.
One of the things I find most striking about the crew's role is the care, focus and coordinated effort required of the group. There is constant communication between two way radios in the different vehicles to keep everyone moving in the same direction and on the same page. There is also an awful lot of care and focus---crew watching out for cyclists, crew looking out for other crew. Great work team!
They are accompanied by Crew Chief- Mike Bryant (Kyle's Dad), Phil Vickers (Sean's Brother), Blake Andrews (Kyle's friend), and Mike Gore (Sam Bridgman's friend). The crew makes sure the riders are protected from traffic, that their path is well lit, that they know which direction to travel, are well fed and hydrated, and that the transitions between riders is safe and within the rules. Everyone is decked out in stylin reflective gear and headlamps. (When we get a good photo of the crew in their gear, we'll post it.) Most of this crew has worked back to back shifts (ie on the road since the start)---and they retire for the evening at 4am and a new shift begins. The RV was manned by Stephen Parsons (Erin's O'Neil's friend) and Bob O'Neil (Erin O'Neil's Dad) on the first shift. Steve masterfully navigated some curvy, narrow and hilly terrain to get to the meet up point with the riders back in Borego Springs. Paul Konanz (Brianne Konanz's Dad) and Tracy Allgeier (Mike Mellott's friend) are at the helm of the RV now-----finding quiet places to pull the RV off the road so resting riders and crew can get some sleep. They juggle that with the need to stay ahead of the riders on the road. Diane Bryant (Kyle's Mom) and Aaron Farley (Kyle's Roommate) have had the food prep shifts--keeping the fridge well stocked with sandwiches and making sure the riders eat. Mike Andresen (FA parent), drove one of the rider follow vehicles at the start. Mike meticulously researched the Day 1 route for the team to ensure that the riders were well informed of the challenges of this route---and planned their coverage accordingly. Mary and I spent the late evening attempting to chase down our first "go for" run. The mandatory safety flags on our two follow vans got pretty beat up over the first 80 miles---so we went in search of replacements. We struck out at Home Depot---and with most stores closing by 9pm we decided to make our way up the course to put us in closer position to the team tomorrow morning as well as possible safety flag suppliers like Walmart or Sears.
One of the things I find most striking about the crew's role is the care, focus and coordinated effort required of the group. There is constant communication between two way radios in the different vehicles to keep everyone moving in the same direction and on the same page. There is also an awful lot of care and focus---crew watching out for cyclists, crew looking out for other crew. Great work team!
12.6.10
GPS Tracker is Online!
After some minor hicups, the GPS Tracker is online and you can follow
us live from the link above.
us live from the link above.
We just dropped into the desert and the temperature went up as the sun
went down. Here comes the first night of the trip.
At TS #1
> That's RAAM code for time station -Sean is cruising. We're just over
> three hours in, so far so good - Sheriff Gore runs a tight ship. The
> glass elevator is coming up...
> three hours in, so far so good - Sheriff Gore runs a tight ship. The
> glass elevator is coming up...
Successful Start
We are at mile 23. Sean is starting his first pull. Everything is
running smooth. Mike just kicked butt on a gnarly climb.
running smooth. Mike just kicked butt on a gnarly climb.
Kyle Bryant
Ride Ataxia
5020 A Street
Sacramento, CA 95819
rideataxia.org
kyle@rideataxia.org
Race Day
My alarm just went off but I have been awake for a couple hours. Heart
racing, butterflies flying, I gotta save some of this energy for the
race (don't worry there's plenty more where that came from).
racing, butterflies flying, I gotta save some of this energy for the
race (don't worry there's plenty more where that came from).
I am grateful for our dedicated crew who has been up for a couple
hours making final preparations.
This morning we will walk through rider exchanges in the parkinglot
and then the race starts at 2pm!
Trying to sleep
It is 1230 on the morning of the race and we are trying to get to
sleep despite strong feelings of excitement, anticipation and purpose.
This is going to be an epic journey and I am glad to have you here to
experience it with us!
sleep despite strong feelings of excitement, anticipation and purpose.
This is going to be an epic journey and I am glad to have you here to
experience it with us!
The GPS tracker will go live today and we will try to update the blog
as often as possible.
The race starts at 2pm today!
11.6.10
10.6.10
Successful Day!
and lighting and all the bikes have all required reflective tape and
lighting. Everyone pulled together and ironed out all the details to
make it happen on time.
We finished up the day with a huge meal at Outback Steakhouse. On the
way back from the restaurant we discussed the difference between a
triplet repeat and a point mutation in FA. Mike Andresen gave us a
laymen lecture from the back of the rental car and brought us a little
closer to an understanding...now I realize many of you have no idea
what a triplet repeat or a point mutation is so here's my challenge:
For those that have a decent understanding of these concepts, please
post your explanation in a comment below. Perhaps we can all learn
something about FA and what causes it.
By the way I checked the analytics and we had 408 hits on this blog
yesterday! Biggest day ever! Thank you for spreading the word. Stay
tuned and tell a friend!
9.6.10
Oceanside
We made it to Oceanside, unloaded the bikes onto our hotel rooms and
went to dinner as a team.
Tomorrow the crew will finalize all the wiring and signage for all
vehicles and have them ready for inspection at 5pm. Meanwhile the
riders will go on a maintenance ride to make sure everything is
working properly after the trip down.
We will get together at 430 for the team photo then inspection is at
5pm sharp. Tardiness will result in a time penalty.
went to dinner as a team.
Tomorrow the crew will finalize all the wiring and signage for all
vehicles and have them ready for inspection at 5pm. Meanwhile the
riders will go on a maintenance ride to make sure everything is
working properly after the trip down.
We will get together at 430 for the team photo then inspection is at
5pm sharp. Tardiness will result in a time penalty.
Still Driving
get there. The RV is very packed so we don't want it to go faster than
55mph. That made for a long day!
We are on our way to Oceanside! We had overwhelming support at Nugget this morning as you can see from the photo below! I told the crowd that when I was first diagnosed with FA my family and I were scared, we did not know what the future would hold. So it means the world to us to have their support. The same goes for YOU, thank you for reading.
Now we are on the road with 8 people in the RV and 6 people between the two vans. We will meet Felicia, Mary and Mike A. in Oceanside this afternoon.
Now we are on the road with 8 people in the RV and 6 people between the two vans. We will meet Felicia, Mary and Mike A. in Oceanside this afternoon.
8.6.10
Anxious
We are leaving in the morning. It's hard to believe this is actually happening!
Up at 430, leave the house by 545, Breakfast and sendoff at Nugget with friends, family and supporters (pictures, I promise). Then we are off on a 9 hour drive down to Oceanside for the final preparations for the race!
Mike M and I set up our phones to be able to post to the blog so you may see some shorter posts and there may be a little bit of a trial period as we try out the new posting method.
One last thing before I attempt to calm down and get some sleep...I just checked the analytics for this blog and today we got more hits than ever in one day (190), granted this blog is young but the point is that we want that number to keep going up! We are not pushing donations as much with this race, more than money we want people to hear about the cause and this crazy adventure. This is an opportunity to help the cause without writing a check. So please take this opportunity and instead of reaching into your wallet reach into your address book and send this link along to as many people as you think might find it interesting. Lets send the hit count through the roof! I am setting our team goal (you are part of the team) at 1,000 hits in one day. That seems a little high but lets think big! I will try to keep you posted periodically on the hit count and I promise to try to keep the blog exciting, entertaining and up to date.
Good Night.
Up at 430, leave the house by 545, Breakfast and sendoff at Nugget with friends, family and supporters (pictures, I promise). Then we are off on a 9 hour drive down to Oceanside for the final preparations for the race!
Mike M and I set up our phones to be able to post to the blog so you may see some shorter posts and there may be a little bit of a trial period as we try out the new posting method.
One last thing before I attempt to calm down and get some sleep...I just checked the analytics for this blog and today we got more hits than ever in one day (190), granted this blog is young but the point is that we want that number to keep going up! We are not pushing donations as much with this race, more than money we want people to hear about the cause and this crazy adventure. This is an opportunity to help the cause without writing a check. So please take this opportunity and instead of reaching into your wallet reach into your address book and send this link along to as many people as you think might find it interesting. Lets send the hit count through the roof! I am setting our team goal (you are part of the team) at 1,000 hits in one day. That seems a little high but lets think big! I will try to keep you posted periodically on the hit count and I promise to try to keep the blog exciting, entertaining and up to date.
Good Night.
Preparations
Bob and Steve are getting the vans ready
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while Mike M and Mike G get all the bike gear together.
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I think we may just pull this off.
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while Mike M and Mike G get all the bike gear together.
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7.6.10
More News Coverage!
Bob, Steve and Mike G. are here. We got the Dodge Caravans we needed. The racks are assembled. The PA systems are hooked up. We still have a lot to do but we had a very good start today.
Tomorrow we will continue with preparations and then we leave the next day!
Plus Channel 13 came out and shot a story!
Check it out: Cyclist Riding Across Country Despite Illness
Tomorrow we will continue with preparations and then we leave the next day!
Getting Started
We are finally getting started today!
Mike Gore is flying in at noon and then we are heading over to pick up the CB's (6 vehicle to vehicle radios with a range up to 30 miles!). Then we will head back to the airport to pick up Bob and Steve at 2pm. At 230 we will all meet (plus Mike Bryant and Paul K.) at Dollar car rental to pick up the rental vans.
The rental van issue:
We have been planning a rack system for the vans and in order to make it work we need at least one Dodge Caravan (two preferred). The problem is that the rental company was unable to guarantee the make and model of our vehicles so we are crossing our fingers. We need the Dodge so bad that we made a duplicate reservation at Enterprize! Hopefully the universe is good to us today.
Once we get the vans we will bring them back here to m place to install the racks and make sure we are not going to need to buy different/extra parts.
We will get all the bikes by tomorrow morning and Mike G. will do the final tune ups and get familiar with the bikes (Mike is the "Bike Whisperer"). Tomorrow we will finish up the preparations and load all the gear into the Vans and the RV, I'm a little nervous about how much stuff we have but it will probably seem a little more reasonable once it is out of the boxes and out of my living room.
Mike Gore is flying in at noon and then we are heading over to pick up the CB's (6 vehicle to vehicle radios with a range up to 30 miles!). Then we will head back to the airport to pick up Bob and Steve at 2pm. At 230 we will all meet (plus Mike Bryant and Paul K.) at Dollar car rental to pick up the rental vans.
The rental van issue:
We have been planning a rack system for the vans and in order to make it work we need at least one Dodge Caravan (two preferred). The problem is that the rental company was unable to guarantee the make and model of our vehicles so we are crossing our fingers. We need the Dodge so bad that we made a duplicate reservation at Enterprize! Hopefully the universe is good to us today.
Once we get the vans we will bring them back here to m place to install the racks and make sure we are not going to need to buy different/extra parts.
We will get all the bikes by tomorrow morning and Mike G. will do the final tune ups and get familiar with the bikes (Mike is the "Bike Whisperer"). Tomorrow we will finish up the preparations and load all the gear into the Vans and the RV, I'm a little nervous about how much stuff we have but it will probably seem a little more reasonable once it is out of the boxes and out of my living room.
6.6.10
Weather
Yesterday and today have been the first hot days of summer here in Sacramento and as I sit here sweating (I'm training for the heat...no just kidding, I just don't have central air) I am thinking of what the weather is going to be like on the route.
The following is a periodic report by one of our crew members, Mike Andresen, which shows the predicted highs and lows along the route. These numbers will change a little because we are still a week out but this gets us in the Ball Park. I can't wait for Parker!
Weather Report - One Week Before RAAM
Race day temp estimates by Time Station plus trends beyond California
- Oceanside – Highs 72 lows 58. Wind 6 mph W.
- Valley Center (inland) – Highs 81, lows 55 Wind 8 mph W
- Borrego Springs - Highs 97 lows 69 Winds 8 mph NW
- Blythe - Highs 101-3 lows 70 Winds 10 mph S-SW
- Parker - Highs 104 lows 73 Winds 9 mph SE
- Salome - Highs 100 lows 70 Winds 9 mph W-SW
- Congress - Highs 93 lows 61 Winds 9 mph S
- Prescott - Highs 81 lows 49 Winds 11 mph S-SW
- Cottonwood - Highs 95 lows 61 Winds 11 mph S
- Flagstaff - Highs 79 lows 41 Winds 13 mph S SW
- Tuba City Highs 91 lows 55 Winds 11 mph S SW
- Kayenta Highs 85 (pollen warning) lows 55 Winds 9 mph W
- Mexican Hat - 92 (high pollen warning) lows 58 Winds 11 mph W SW
- Montezuma Creek - 92 (high pollen warning) lows 57 Winds 12 mph W SW
- Cortez – 86 (high pollen warning) lows 45 Winds 14 mph SW
- Durango - 81 (high pollen warning) lows 43 Winds 13 mph S SW
- Pagosa Springs - 79 (high pollen warning) lows 43 Winds 10 mph S SW
- South Fork - 73 (high pollen warning) lows 47 Winds 16 mph S SW **”nickel size hail” today
- Alamosa - 81 lows 47 Winds 16 mph S **Severe Hail – take shelter” today
- La Veta - 77 (high pollen warning) lows 48 Winds 15 mph S-SW
- Trinidad - 81 (high pollen warning) lows 56 Winds 16 mph S-SW
- Kim - 81 (high pollen warning) lows 55 Winds 17 mph S
- Walsh - 87 (very high pollen warning) lows 60 Winds 16 mph S SE
- Ulysses - 89 (very high pollen warning) lows 61 Winds 16 mph SE
- Montezuma - 87 (high pollen warning) lows 62 Winds 16 mph SE
- Greensburg - 89 (high pollen warning) lows 67 Winds 15 mph S SE
- Pratt 90 (high pollen warning) 67 15 mph T-storms
- Maize, El Dorado, Yates Center, Ft Scott
- Weaubleau 84 66 8 mph SW 10-60% H daily TStorm
- Camdenton 84 68 8 mph W 10-60% H daily TStorm
- Jefferson City 86 68 8 mph W 10-60% H daily TStorm
- Washington 79 65 Tornado Alert, FLOOD WARNINGS Winds 13 mph W NW 10-40% H daily TStorm
- West Alton - Mississippi River – 84 Widespread Tornado Alert, FLOOD WARNINGS lows 69 Winds 9 mph 40-60% H daily TStorm
- Greenville, Effingham, Sullivan
- Bloomington 80 64 14 mph W
- Greensburg
- Oxford 87 67 Winds 8 mph W SW 40-60% H daily TStorm
- Blanchester, Chillicothe, Athens, Ellenboro, Grafton
- Gormania 79 57 6 mph W 10-60% H daily TStorm
- Hancock 90 66 7 mph SW
- Rouzerville, Hanover, Mt Airy, Odenton
- Annapolis 83 71 10 mph S SWW 20-60% H daily TStorm
5.6.10
Whatever it takes
RAAM is one week away and as I sit among all the items that have been shipped to my house for the trip (Bike racks, nutritional supplements, bike tools, reflective safety equipment, bike parts, trike parts) I am a little nervous but I am feeling pretty confident. We have done everything possible to give the team the best chance at conquering this race.
1. We have been training like crazy. In fact the team is finishing up our heavy training this weekend and we will be pretty light as we make the final preparations this week. Sean rode 70 miles yesterday, I rode 50 today, Mike rode 60+ today and John rode a century today. We all plan to ride a pretty good ride tomorrow and then the rest of the week is just mental preparation.
2. We have assembled a solid crew with a strong commitment to the cause:
Mike Bryant - Grass Valley, CA
Diane Bryant - Grass Valley, CA
Paul Konanz - Santa Rosa, CA
Tracy Algeier - Sacramento, CA
Aaron Farley - Sacramento, CA
Blake Andrews - San Luis Obispo, CA
Phil Vickers - Bakersfield, CA
Mike Gore (Mechanic Mike) - Seattle, WA
Mike Andresen - Portland, OR
Felicia DeRosa - Exton, PA
Mary Caruso - North Branford, CT
Bob O'Neal - Boston, MA
Steve Parsons - Boston, MA
These 13 people come from different places all over the country and each person has a different specific reason for joining the team but there is one thing that unites this crew: the desire to find the cure for Friedreich's ataxia.
We have had weekly conference calls with our 13 person crew for several months. The stuff discussed on the calls included topics like figuring out how to rack 5 bikes and two trikes on two rental vans when we aren't even guaranteed that we will get the vans we want. and What are we going to eat? and How are we going to get the gear back when we get to the east coast? and How do we fit 9 people in an RV with 6 people sleeping at a time? and What about showers and other hygienic things? and the list goes on...and on. I am sure there have been a few sleepless nights among the crew members as the ponder their individual tasks. And we still have quite a few sleep deprived days and nights ahead of us.
With all of this in mind when it comes down to it the fact remains that we just need to do whatever it takes to get safely across the country. In doing so we are representing of FA FAmilies worldwide who are willing to do whatever it takes to cure this disease.
1. We have been training like crazy. In fact the team is finishing up our heavy training this weekend and we will be pretty light as we make the final preparations this week. Sean rode 70 miles yesterday, I rode 50 today, Mike rode 60+ today and John rode a century today. We all plan to ride a pretty good ride tomorrow and then the rest of the week is just mental preparation.
2. We have assembled a solid crew with a strong commitment to the cause:
Mike Bryant - Grass Valley, CA
Diane Bryant - Grass Valley, CA
Paul Konanz - Santa Rosa, CA
Tracy Algeier - Sacramento, CA
Aaron Farley - Sacramento, CA
Blake Andrews - San Luis Obispo, CA
Phil Vickers - Bakersfield, CA
Mike Gore (Mechanic Mike) - Seattle, WA
Mike Andresen - Portland, OR
Felicia DeRosa - Exton, PA
Mary Caruso - North Branford, CT
Bob O'Neal - Boston, MA
Steve Parsons - Boston, MA
These 13 people come from different places all over the country and each person has a different specific reason for joining the team but there is one thing that unites this crew: the desire to find the cure for Friedreich's ataxia.
We have had weekly conference calls with our 13 person crew for several months. The stuff discussed on the calls included topics like figuring out how to rack 5 bikes and two trikes on two rental vans when we aren't even guaranteed that we will get the vans we want. and What are we going to eat? and How are we going to get the gear back when we get to the east coast? and How do we fit 9 people in an RV with 6 people sleeping at a time? and What about showers and other hygienic things? and the list goes on...and on. I am sure there have been a few sleepless nights among the crew members as the ponder their individual tasks. And we still have quite a few sleep deprived days and nights ahead of us.
With all of this in mind when it comes down to it the fact remains that we just need to do whatever it takes to get safely across the country. In doing so we are representing of FA FAmilies worldwide who are willing to do whatever it takes to cure this disease.
4.6.10
Blog Posting Strategy
We have set up a plan to keep updates flowing while we are on the road. We have a volunteer on the ground who will post for us when we cannot get to Internet access. So when you see a posting that is from mary.hallett@gmail.com (like this one) it is our ghost writer (thanks Mary!) and we will attempt to keep it clear who the post is coming from - me, Sean, Mike or John. Stay tuned - Kyle!
3.6.10
Team FARA on the News!
We shot this story with News 10's Brandon Atchison and it aired tonight here in Sacramento.
Please pass this video on to anyone who might be interested!
Thanks Brandon!
Please pass this video on to anyone who might be interested!
Thanks Brandon!
Send Off Celebration!
One of our generous sponsors is Nugget markets and they are going to host a little send off celebration for us at their Elk Grove, CA location!
We are departing from Nugget market in Elk Grove on Wednesday June 9 and we invite you to come gather and see us off at 715am with our departure at 745 sharp. We will be driving down to Oceanside to make our final preparations for the race and then the start is on June 12. Please come celebrate with us as we begin this crazy adventure!
Link to this event on Facebook!
30.5.10
Live GPS Tracking!
You can follow Team FARA live online using our GPS tracking site provided by TrackMe360.com. Check it out by clicking HERE. Starting June 12 this page will feature a little dot that will indicate where we are at all times. This link is also located above or you can bookmark it so you can check back often.
The start of the race is now less than two weeks away and we are all anxious to get on the road. The four riders plus 13 crew members have been on weekly conference calls for the last several months and we are confident that we have all the details figured out. The goal is to overthink stuff before hand so when we hit the road, everything is automatic and all we have to do is turn the crank.
Speaking of turning the crank, I received a bunch of gear from Catrike a couple days ago and finally got the chance to assemble it and try it out over the weekend. Catrike sent me a set of front wheels with super fast Schwalbe Kojak tires and ceramic bearings. I am confident my trike is performing better than ever, and all members of the team are in the best shape of our lives! Bring on The Race!
27.5.10
Fluid
"Fluid founders Richard Smith and Dave Brown gained local and national attention for their research in nutritional biochemistry at Cal Pol State University and their work with athletes both nationally and internationally. Today they continue their sports science research and are developing new products to diversify the Fluid line of recovery drinks.
You can find the stylized Fluid logo sponsoring athletes across several disciplines, including Olympic Track & Field athletes, BMX world champions, AVP volleyball players, and a professional triathlon development team. For more information about NEHP, Fluid, or its founders please contact us.
The original mission: Fluid, Everything you need, nothing you don’t."
We were chatting with Richard and we mentioned our upcoming RAAM adventure. He was immediately hooked and he offered his help in any way he could. We mentioned that we did not have a recovery drink at that point and he said "DONE". Richard is sending us all the product we will need for recovery after every 4 hour shift.
Richard has also set up a promotional code for all Team FARA fans: Fluid is proud to be a supporting sponsor of TeamFARA! For a limited time, 20% of every order placed at http://www.LiveFluid.com/ with code "GoTeamFARA" will be donated back to the team. Go get some Fluid Recovery drink now & support the team!
10.5.10
Radio Promo
Hey Folks. I was on the radio this morning talking about Ride Ataxia and Team FARA. Click HERE to listen.
9.5.10
Jerseys
Check out the team Jerseys donated by Lawrence Phillips / Phillips Blueshirt Co. and AK Apparel. Larry (superlario) has been our jersey designer for about a year and he has designed some killer jerseys for the Philly, Tampa, and NorCal rides and we are super stoked with the job he did on the RAAM jersey.
Click HERE for a larger view of the jersey.
Larry also did something a little special for us. He designed shirts for the crew. These will be tshirts made of breathable jersey style material. We are all one team and Larry is helping us look like it!
Larry also did something a little special for us. He designed shirts for the crew. These will be tshirts made of breathable jersey style material. We are all one team and Larry is helping us look like it!
Click HERE for a larger view of the crew shirt.
The shirts and jerseys are being manufactured right now courtesy of AK Apparel.
8.5.10
Catrike
Our Team Mechanic, Mechanic Mike, gave us all a list of parts he would like us to have for the race, which included spare tires, tubes, wheels, spokes, derailleur hangers etc. So I went to work finding all this stuff and the first email I sent was to Catrike because I figured this would be the easiest way to find a spare 16" wheel with a disc brake. I got an email right back saying that Catrike would be stoked to support the team with whatever we need. Such great people!
So my list is cut way down and I am just rounding up some simple stuff. This is a team effort and Catrike is playing a big part, thanks guys!
Find out more about the full line of Catrike performance trikes at at http://www.catrike.com
5.5.10
Hitch Rider
Trike transport is not easy. A trike is large and it has 3 wheels!
We need to transport two trikes on RAAM. One trike will be on the roof of the van for use if the primary trike fails and one trike needs to be easily accessible for constant on and off during riding shifts.
So I emailed the guys at Hitch Rider to see if they could help us out and they said they'd donate one of their single trike tilting racks for our adventure! The rack is being shipped to my place right now! Thanks Hitch Rider!
Find out more about Hitch Rider trike racks and bike racks at http://hitchrider.com
4.5.10
TeamFARA on Good Day Sacramento
Mike Mellott and Sean Baumstark were able to interview with Mark S. Allen this morning on Sacramento's premiere morning show, Good Day Sacramento.
Upon learning the story about TeamFARA and RAAM, Allen said "we want to champion your cause."
Mark S. Allen and his crew at Good Day Sacramento gave us an incredible opportunity this morning to share with tens of thousands of viewers about Ride Ataxia NorCal, RAAM, and The Ataxian documentary currently being produced by Kevin Schlanser.
Unfortunately, Kyle's grandmother Mac, passed away at the end of last week and he and his family have been together in Montana for the past few days, causing him to miss today's interview. Grandparents are very special people, constant pillars of support and encouragement. Please remember Kyle, his father & Crew Chief Mike, and the entire Bryant family in your prayers as they grieve the loss of such a special and important woman.
29.4.10
Party to Pardee, WIldflower, & Hincapie
The weeks seem to be flying by right now! When we started this journey to RAAM it seemed like it was so far way. Not anymore...with only 6 weeks between now and the starting line, the rubber is meeting the road. Nerves are starting to set in, last minute details are causing a little stress, and the training is more and more vital to a successful finish.
And finally....meeting George Hincapie:
At the beginning of the month the team was able to ride together for a metric century in the Party to Pardee ride not too far from Sacramento. We did the Pardee ride one week after our 24-hour training ride.
As we posted earlier, the team (excluding Mike - couldn't make it) were able to participate in the Wildflower event in Chico, CA this past weekend. Although I personally set out to ride the entire century, I changed my goal at mile 33 and began to follow the Mildflower route, finishing 70 miles on Sunday. Kyle rode 65 and John completed the extent of the course, finishing with 104 miles for the day. The course was beautiful for the first half, but mostly flat and boring the second half. Although the sun was shining all day, it wasn't terribly hot. Overall, the day was great for all of us...although we realized even more areas that we need to continue focusing on and improving in.
One highlight of the day - we were able to connect with FLUID muscle recovery. http://www.livefluid.com/
This vendor was setup at the finish line and Kyle & I were able to talk with one of the founding partners and share a lot about TeamFARA and RAAM. Before our conversation was over, Richard donated enough containers to supply the team for the 9 days of RAAM! We are grateful for this form of sponsorship and are looking forward to a great friendship and partnership with FLUID.
One highlight of the day - we were able to connect with FLUID muscle recovery. http://www.livefluid.com/
This vendor was setup at the finish line and Kyle & I were able to talk with one of the founding partners and share a lot about TeamFARA and RAAM. Before our conversation was over, Richard donated enough containers to supply the team for the 9 days of RAAM! We are grateful for this form of sponsorship and are looking forward to a great friendship and partnership with FLUID.
And finally....meeting George Hincapie:
Mike and I were able to attend a Sponsor's Reception in Davis, CA for the AMGEN Tour of California! My employer, Nugget Markets, is a sponsor for the Davis stage of the Tour and were generous and kind to think of me for possible attendance to the event. We were able to visit with other local sponsors, admire the history and exhibitions contained in the U.S. Bicycling Hall of Fame in Davis, and enjoy great food and wine! The main draw - George Hincapie. Hincapie is a professional cyclist and will be racing the AMGEN Tour in just a few weeks! You can read more about him and his illustrious career at http://www.georgehincapie.com/
24.4.10
Less Than 7
We are one day shy of being 7 weeks away from our starting line in Oceanside, CA.
Its crazy how time flies.
About 3 weeks ago, your RAAM cyclists from TeamFARA participated in a metric century, Party To Pardee, riding approximately 63 miles. All four of us were able to ride in this event, along with John's wife Stephanie, her Dad, stepmom, and another friend of the team, Brandon. The ride was challenging and fun for all of us (most parts anyway), and we all finished strong! The weather was chilly and the sun didn't show its face at all. Thankfully we didn't have rain! The course was very hilly, with approximately 4,000 vertical feet of climbing.
Now...we are in Chico, CA., riding the Chico Wildflower tomorrow. This is a very popular northern California course, with over 4,000 cyclists participating. The Wildflower course covers 100 miles of varied terrain. We've had beautiful weather the past few days in the area and tomorrow should be a great day for riding! Maybe this time I can get a little sun on these white legs!
We will post more updates very soon...with pictures from the Party to Pardee ride and tomorrow's Wildflower ride! Also...I will post pictures and share a little story about mine & Michael's opportunity to attend the Sponsor's Reception for the AMGEN Tour of California (Stage 2) earlier today and how we were able to meet George Hincapie!
Thank you for your continued support and loud cheers along this journey! RAAM will be here before you know it.
Tomorrow we will be closer to finding a cure.
Its crazy how time flies.
About 3 weeks ago, your RAAM cyclists from TeamFARA participated in a metric century, Party To Pardee, riding approximately 63 miles. All four of us were able to ride in this event, along with John's wife Stephanie, her Dad, stepmom, and another friend of the team, Brandon. The ride was challenging and fun for all of us (most parts anyway), and we all finished strong! The weather was chilly and the sun didn't show its face at all. Thankfully we didn't have rain! The course was very hilly, with approximately 4,000 vertical feet of climbing.
Now...we are in Chico, CA., riding the Chico Wildflower tomorrow. This is a very popular northern California course, with over 4,000 cyclists participating. The Wildflower course covers 100 miles of varied terrain. We've had beautiful weather the past few days in the area and tomorrow should be a great day for riding! Maybe this time I can get a little sun on these white legs!
We will post more updates very soon...with pictures from the Party to Pardee ride and tomorrow's Wildflower ride! Also...I will post pictures and share a little story about mine & Michael's opportunity to attend the Sponsor's Reception for the AMGEN Tour of California (Stage 2) earlier today and how we were able to meet George Hincapie!
Thank you for your continued support and loud cheers along this journey! RAAM will be here before you know it.
Tomorrow we will be closer to finding a cure.
22.4.10
Everything Has Its Place - Gearing Up
"Everything has its place." We heard this statement a few times at the RAAM Crew Orientation in January. Most notably, I remember Lee "Fuzzy" Mitchell say it in reference to gear, parts, accessories, etc. for the riders in RAAM. He was talking about making sure everything from sunglasses, helmets, shoes, and water bottles always return to their designated places after the cyclist dismounts his bike. It saves time and stress when everything is in its plae and nobody is panicking looking for it when it's needed!
This statement is one that has stuck with me since that orientation. I've been more conscious of its basic principle and intentionally applying it to all of life - from my gear bag to my garage, from my bedroom to my car, from home to work - everything has its place, and if we take the time and effort to exercise consistency with this principle, it makes life so much easier, manageable, and less stressful. Think about it...how many times are you hunting for your keys? Those sunglasses? Your phone? Or how often are you drowning in a stack of mail and paperwork that just needs to be organized and put away? Maybe its a messy room, with "stuff" just cluttering the edges and the corners, which undoubtedly has a negative effect on the psyche and tends to "clutter" the mental and perhaps emotional capacities of our lives. I know for me, when stuff is out of place or left unfinished, it can be overwhelming, stressful, and sometimes depressing.
I've done pretty well over the last few months to remember and exercise this principle. I do so to a fault right now, just trying to get into the habit and practice of taking the time and effort to put things in their place at the appropriate time. Unfortunately, a few days ago I went out for a ride that I knew would keep me out for several hours and I left home without one of the essential components for riding in the dark. Oh, I had my lights, both headlamp and rear, I just didn't have anyway of mounting my headlamp! Two weeks prior, my TeamFARA RAAM teammates and I participated in an organized metric century event about an hour outside of Sacramento. I removed my headlamp mount that day to utilize and test some aero bars. I was careful to place the mount in my gear bag at that time, but when it came time to ride the other night, my mount remained comfortably cozy in that side pocket as I only remembered to grab the light - and not the mount!
So...a reminder and a lesson for us all...not only do things have their place so that you can always find them and stay organized, but we have to remember to put those things to use when necessary!
If you are crewing for RAAM or another FARA/RideAtaxia event...thank you in advance for keeping this principle in the forefront of your mind, and thank you for helping us keep things in their places!
This statement is one that has stuck with me since that orientation. I've been more conscious of its basic principle and intentionally applying it to all of life - from my gear bag to my garage, from my bedroom to my car, from home to work - everything has its place, and if we take the time and effort to exercise consistency with this principle, it makes life so much easier, manageable, and less stressful. Think about it...how many times are you hunting for your keys? Those sunglasses? Your phone? Or how often are you drowning in a stack of mail and paperwork that just needs to be organized and put away? Maybe its a messy room, with "stuff" just cluttering the edges and the corners, which undoubtedly has a negative effect on the psyche and tends to "clutter" the mental and perhaps emotional capacities of our lives. I know for me, when stuff is out of place or left unfinished, it can be overwhelming, stressful, and sometimes depressing.
I've done pretty well over the last few months to remember and exercise this principle. I do so to a fault right now, just trying to get into the habit and practice of taking the time and effort to put things in their place at the appropriate time. Unfortunately, a few days ago I went out for a ride that I knew would keep me out for several hours and I left home without one of the essential components for riding in the dark. Oh, I had my lights, both headlamp and rear, I just didn't have anyway of mounting my headlamp! Two weeks prior, my TeamFARA RAAM teammates and I participated in an organized metric century event about an hour outside of Sacramento. I removed my headlamp mount that day to utilize and test some aero bars. I was careful to place the mount in my gear bag at that time, but when it came time to ride the other night, my mount remained comfortably cozy in that side pocket as I only remembered to grab the light - and not the mount!
So...a reminder and a lesson for us all...not only do things have their place so that you can always find them and stay organized, but we have to remember to put those things to use when necessary!
If you are crewing for RAAM or another FARA/RideAtaxia event...thank you in advance for keeping this principle in the forefront of your mind, and thank you for helping us keep things in their places!
25.3.10
Update
Training:
While the individual team members have been training on their own, we started our weekly team training runs last weekend. It was great to start putting in the miles on the bike alongside teammates. It helps us build camaraderie and collectively push our cycling limits. This weekend we have a 24 hour relay ride planned to begin to get a feel of riding around the clock and the kinds of things we’ll need from our support crew.
Team FARA on the RAAM Website:
We are honored to have our Team FARA photos and the cyclists’ bios posted on the Race Across America site. To view the profile please click here.
Team FARA in RAAM Documentary:
We are also excited to be working with film maker Kevin Schlanser to capture the Race Across America journey on film and bring awareness to Friedreich’s ataxia research. Kevin has already started filming the team as we prepare for our cross country journey. To view the documentary trailer please visit: www.theataxian.com
24.3.10
23.3.10
Documentary
Hi Folks,
We are currently gearing up for a 24 hour Training ride which will go on this weekend. We will begin to work out some of the kinks and get an idea of what we are dealing with.
We also now have a team of 12 crew members who we could not be more excited about. More details soon and we are looking for at least one more crew member so if you're interested please read How YOU Can Help and then send me an email at kyle@rideataxia.org.
In the mean time please check out the trailer for our team's documentary. The filmmaker, Kevin Schlanser will be travelling with us to capture all the drama, humor and optimism on this journey. A little more info at http://theataxian.com.
The Ataxian - Trailer #1 from Kevin Schlanser on Vimeo.
We are currently gearing up for a 24 hour Training ride which will go on this weekend. We will begin to work out some of the kinks and get an idea of what we are dealing with.
We also now have a team of 12 crew members who we could not be more excited about. More details soon and we are looking for at least one more crew member so if you're interested please read How YOU Can Help and then send me an email at kyle@rideataxia.org.
In the mean time please check out the trailer for our team's documentary. The filmmaker, Kevin Schlanser will be travelling with us to capture all the drama, humor and optimism on this journey. A little more info at http://theataxian.com.
The Ataxian - Trailer #1 from Kevin Schlanser on Vimeo.
16.3.10
In Memory of Jack Baumstark
Dear Team FARA Supporters,
Last week we received the unfortunate news that Jack Baumstark (father of teammate Sean, strong team supporter, all around great person) lost his battle with cancer.
A note from Sean (3/11/2010): "My Hero, my Dad, Jack, went home to be with the Lord this morning shortly after 2am. There is such a pain that is unexplainable. I am forever grateful for the past year of time and relational growth between my dad and I. My family and I appreciate all the support we've received from loved ones during his battle with cancer. His life-celebration will be held 10am Friday March 19, 1st Assembly of God of Fairfield 2207 Union Ave., Fairfield. Reception immediately following."
A note from Sean (3/11/2010): "My Hero, my Dad, Jack, went home to be with the Lord this morning shortly after 2am. There is such a pain that is unexplainable. I am forever grateful for the past year of time and relational growth between my dad and I. My family and I appreciate all the support we've received from loved ones during his battle with cancer. His life-celebration will be held 10am Friday March 19, 1st Assembly of God of Fairfield 2207 Union Ave., Fairfield. Reception immediately following."
To leave a note of support for Sean please visit his facebook page: Sean Baumstark
Jack, you will be missed!
4.3.10
Promotions
Hi everybody. I did a couple promotional gigs this week including a radio interview with a station here in Sacramento. The 20 minute clip will air this weekend but you can read a little bit here: Ride On
By the way...check out our new promo pack designed by the talented Crystal Wade (wadesign.net): Team FARA Promo. Crystal makes us look good!
By the way...check out our new promo pack designed by the talented Crystal Wade (wadesign.net): Team FARA Promo. Crystal makes us look good!
26.2.10
Front Page
Check out this article from the Grass Valley Union that made the front page this week: Crusade for a Cure
19.2.10
Ultra FARAthon!
Check this out...
A woman is going to run a 7 day Ultra Marathon in the desert to benefit FA.
Her name is Marilena Wilkinson and here are a couple pieces of her website:
"By participating in the Atacama Desert Ultra Marathon, I will be attempting to cover 250km across some of the most inhospitable terrain in 7 days. A-marathon-a-day is an obvious comparison; but it is much more than that. It has been described as one of the toughest, most gruelling ultra-distance events in the world.
Extremes in temperature, climbs to heights in excess of 10,000ft, and long stretches of energy sapping salt-flats might just give you an idea of what I am committing myself to do.
A woman is going to run a 7 day Ultra Marathon in the desert to benefit FA.
Her name is Marilena Wilkinson and here are a couple pieces of her website:
"By participating in the Atacama Desert Ultra Marathon, I will be attempting to cover 250km across some of the most inhospitable terrain in 7 days. A-marathon-a-day is an obvious comparison; but it is much more than that. It has been described as one of the toughest, most gruelling ultra-distance events in the world.
Extremes in temperature, climbs to heights in excess of 10,000ft, and long stretches of energy sapping salt-flats might just give you an idea of what I am committing myself to do.
The main thing, though, is that I am doing it for a wonderful and most worthy cause, which I do hope you will support. Friedreich's Ataxia (FA) is a cruel disease of which there is no known cure. It is a debilitating, life-shortening, degenerative, neuro-muscular disorder.
I have watched its cruel and relentless progress affect the health of the daughter of my very good friends in Hong Kong, Angelo and Monica Pepe. Angelo worked tirelessly raising funds for research into the disease, and spent lots of his own money too. Sadly, Angelo succumbed to cancer at the end of 2008, and, before he died, I promised myself that I would try and help towards his work, and raise money for research in the hope that a cure can be found.
The charities for which I will be raising money are Ataxia UK and Friedreich's Ataxia Research Alliance (FARA). FARA is a non-profit, tax-exempt organisation dedicated to curing FA through research, pharmaceutical/biotech drug development, clinical trials and scientific conferences."
View marilena's website HERE.
10.2.10
Team Photo Shoot
A friend of the team has a make shift photo studio in his office building with studio lights and a high quality camera. He invited the team to use the studio tonight to shoot some promotional photos. None of us are professional photographers but hopefully we can get some quality shots. We'll share the photos here after the shoot!
7.2.10
Inspiration
Hello Team FARA Supporters!
We introduced ourselves to the world three short days ago and we have felt a huge response of support from everyone who hears our story. We have received several phone calls from eager volunteers! Thank you! We are still seeking a few more volunteers and in kind donations. For more info click here: How YOU Can Help.
As the team steps up its training effort, we are constantly looking for sources of inspiration to help us push harder. A dose of inspiration can be found in the story of a team of handcyclists who completed RAAM last year. Here are few pieces of an article about Team Can Be Venture:
"The first summit of Mount Everest, the first sub-4-minute mile — these are athletic feats that redefined our perception of what is possible. And a team of four paraplegic handcyclists has just redefined the possibilities of endurance bicycle racing. At 2 p.m. on June 20, Team Can Be Venture pushed off from the starting line in Oceanside, Calif. — headed for the finish line in Annapolis, Md., 3,021 miles away — in the annual Race Across America, officially known as RAAM, arguably the toughest endurance event in the bicycling world."
"From the start, the racers had a battle on their hands. Keeping pace to meet the cutoff times left no room for error. When not riding, all equipment had to be checked and adjusted, and the riders had to be ready and waiting for their next leg. The transitions — like handing off the baton in a relay race — were crucial. Every minute lost was lost forever, and each minute counted."
Read the entire article from New Mobility magazine here: Handcyclists Conquer Race Across America.
3.2.10
Meet the Team
Team FARA’s 4 members will ride for 30 minutes each before trading positions with a rider in a vehicle. This strategy will allow the team to have at least one rider on the move 24 hours a day. The team will travel the 3000 mile route in less than 9 days.
The team is made up of 4 cyclists who are dedicated to the FARA cause and who have participated in cycling events as a team in the past.
Note: The interviews below were recorded after the team's participation in the RAAM informational seminar which was a 9 hour day of nonstop information about how to get our team across the country safely.
Kyle Bryant
“It’s not just about me anymore, it's about all of us affected by this disease. We're all in this together.”
Founder and Director of Ride Ataxia, FARA’s cycling fundraiser. Diagnosed with Friedreich’s ataxia at age 17, Kyle’s symptoms made riding a traditional bicycle unsafe as he reached college. After graduation he purchased a 3-wheeled cycle and began a journey that would change his life riding 3,500 miles in 3 years and raising over $800,000 for FA research. He’s been cycling ever since and is no stranger to long distances.
Sean Baumstark
“My commitment to cycling is the core of my physical battle strategy against FA, the disease that jeopardizes the quality of life for myself and many of my friends.”
Sean was diagnosed with FA in May of 2007. Devastated by the news he immediately started looking for ways to fight back. Searching online he discovered Kyle Bryant and Ride Ataxia. Kyle and Sean met a few days later and have been friends ever since. Sean fights the effects of FA by staying active and fit and rode with the Ride Ataxia team in 2008 from Sacramento to Las Vegas.
John Lockwood
“I am so excited to be competing in RAAM with Team FARA. I believe this will be the ultimate testimonial for those with FA to take the challenge of fighting the disease head on. I also believe that raising awareness through the ‘world’s toughest bike race’ will bring additional attention and curiosity towards FA that will lead to increased awareness and fundraising to contribute to the research efforts needed to find a cure.”
John started Cycling in 2007 but didn’t really get passionate until meeting Kyle Bryant and learning more about Ride Ataxia and his mission to raise awareness about FA through cycling. John has since participated in Ride Ataxia II & III, and various century rides throughout California.
Mike Mellott
“I am excited for the chance to ride for such a great cause and experience an adventure that will change lives because of it!”
Mike got into cycling 5 years ago on his mountain bike with the goal to get outside more. Mike has been friends with Sean for years and upon hearing about Sean’s diagnosis immediately became a strong supporter of the cause. Mike has been road biking since 2008 in Ride Ataxia II from Sacramento to Las Vegas.
Meet the Crew
Mike Bryant is a founding member of the Ride Ataxia Team and has participated in every mile traveled in the events (approximately 3,500 but who's counting) in support of the FA community. His accomplishments include a 2,500 mile ride from San Diego to Memphis a 650 mile ride from Sacramento to Las Vegas and a 200 mile ride from Portland to Seattle. Building on the experience from many miles on the road, Mike will serve the team on the crew.
Diane Bryant is a founding member of the Ride Ataxia Team and has served as crew for every Ride Ataxia event to date. Diane brings the committment of a loving Mother and the experience of many miles on the road.
Team FARA is actively seeking at least 6 more members for the crew. To find out a little more, please visit How YOU can help.
Meet the Crew
Mike Bryant is a founding member of the Ride Ataxia Team and has participated in every mile traveled in the events (approximately 3,500 but who's counting) in support of the FA community. His accomplishments include a 2,500 mile ride from San Diego to Memphis a 650 mile ride from Sacramento to Las Vegas and a 200 mile ride from Portland to Seattle. Building on the experience from many miles on the road, Mike will serve the team on the crew.
Diane Bryant is a founding member of the Ride Ataxia Team and has served as crew for every Ride Ataxia event to date. Diane brings the committment of a loving Mother and the experience of many miles on the road.
Team FARA is actively seeking at least 6 more members for the crew. To find out a little more, please visit How YOU can help.
About Friedreich's ataxia
What is Friedreich's Ataxia?
Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich's ataxia. Onset of symptoms can vary from childhood to adulthood. Childhood onset of FA is usually between the ages of 5 and 15 and tends to be associated with a more rapid progression. Late onset FA (LOFA) can occur anytime during adulthood. FARA is supporting research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and will lead to treatments that eliminate its symptoms.
Signs and Symptoms
- loss of coordination (ataxia) in the arms and legs
- fatigue - energy deprivation and muscle loss
- vision impairment, hearing loss, and slurred speech
- aggressive scoliosis (curvature of the spine)
- diabetes mellitus (insulin - dependent, in most cases)
- a serious heart condition (enlarged heart - hypertrophic cardiomyopathy)
These symptoms are not present in all individuals with FA, for example diabetes occurs in about 10-20% of individuals with FA. The mental capabilities of people with Friedreich's ataxia remain completely intact. The progressive loss of coordination and muscle strength leads to motor incapacitation and the full-time use of a wheelchair. Most young people diagnosed with FA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s.
Cause
FA is a genetic disorder. FA patients have gene mutations that limit the production of a protein called frataxin. Frataxin is known to be an important protein that functions in the mitochondria (the energy producing factories) of the cell. Frataxin helps to move iron and is involved with the formation of iron-sulfur clusters, which are necessary components in the function of the mitochondria and thus energy production. We also know that specific nerve cells (neurons) degenerate in people with FA, and this is directly manifested in the symptoms of the disease.
Treatments
There are currently no treatments for FA. Patients are monitored for symptom management. FARA is funding research to find a cure. We believe the treatment era for FA is now! As a result of great advancements to understand the cause of the disease, new treatments are now emerging. These treatments address the causes of FA such as gene mutation, frataxin production, iron sulfur clusters, and mitochondrial function. A full listing of treatment initiatives can be viewed in FARA’s treatment pipeline. Several of these treatments will be inclinical trials which require patient participation.
About FARA
FARA Mission / Organization
The Friedreich's Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich's ataxia.
FARA's Mission is to marshal and focus the resources and relationships needed to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases.
FARA's Strategy
FARA focuses on grant making for FA research and building collaborations with organizations dedicated to advancing treatments for FA. Due to the progressive nature of the disease and the promise of treatments in development, there is urgency to our efforts. Directing attention and resources to FA research and partnering with others that share this commitment, FARA believes it can help bring forward effective treatments and a cure for FA.
FARA's Activities
- Raise funds for advancing scientific research in FA.
- Facilitate a competitive and highly regarded grant making program that supports greater than 1 million dollars in research annually and focuses on translational and clinical research (moving discoveries through development to clinical improvements for patients).
- Manage an FA patient registry and support the development of a collaborative clinical network for FA clinical trials.
- Foster public-private partnerships between academic research investigators and pharmaceutical companies.
- Promote the collaborative exchange of information within the scientific community through conferences and networks.
- Work cooperatively with government entities and the other organizations that support scientific research aimed at treatments for this disorder.
- Rally patients, patient families, scientific investigators, healthcare providers, and others to be supporters and advocates for scientific advancements that will lead to treatments and a cure.
FARA's Approach to Treatment
Thanks to the committed efforts of many FA scientists, we now understand the cause of FA and specific mechanisms leading to damage in patients, such as gene mutation, decreased frataxin production, iron sulfur cluster formation, and mitochondrial dysfunction. FARA is supporting the development of treatments aimed at each of these different mechanisms of damage. Because it is based on solid basic science discovery, this targeted approach to treatment has great potential. Furthermore, FA researchers believe that treatment will come in the form of a “cocktail” therapy - meaning that therapies aimed at the different mechanisms of damage have the potential to be used in conjunction with one another to treat the disorder. The graph in the right hand column depicts the different treatment approaches currently being developed with FARA's support. For further information on these research areas, visit the Research Pipeline page.
Research Ripple Effect
Dr. Harold Varmus, former Director or the National Institutes of Health, gave the following testimony before the House Commerce Subcommitte on Health and Environment in 1998:
“The story of Friedreich's ataxia illustrates how many areas of clinical and basic research can come together in unexpected ways. In this rare disorder, research involving neuroscience, genetics, clinical medicine, molecular biology, and even biology of yeast and bacteria are converging. The findings offer insights to basic biology and to many other disorders, and illustrate the importance of understanding the mechanism of disease in order to devise treatments.”
Insights into Friedreich's ataxia could prove beneficial to understandings in other diseases such as:
- Muscular Dystrophies (ALS, SMA)
- Parkinson's Disease
- Huntington's Disease
- Alzheimer's Disease
- Fragile X Syndrome
- Mitochondrial diseases (MELAS, MERF, Lebers)
- Ataxia-telangiectasia
- Cerebellar ataxias
- Diabetes
- Stroke
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