Ataxian Athlete Initiative

Part of the mission of Ride Ataxia is to “EMPOWER Ataxians by inspiring, motivating and providing opportunities to develop physical and mental strength.” The Ataxian Athlete Initiative strives to accomplish this mission.

Through the 2009 Ataxian Athlete Initiative, Ride Ataxia will fund the purchase of a Terra Trike Cruiser (http://www.terratrike.com/cruiser.php)to be given to an aspiring Ataxian Athlete so that he or she may start a personal Ride Ataxia Adventure.
TerraTrike Cruiser:


To apply for the Ataxian Athlete Initiative individuals will tell their story by filling out a simple application and writing a summary about their experiences with Ataxia. The application is available to Ataxians worldwide. Individuals must have been diagnosed with some form of ataxia to qualify.

The applications will be reviewed by a panel of Disabled Athletes, Ataxians and others in the ataxia community. The recipient will be notified by March 1, 2009. The recipient will be announced and the trike presented at the National Ataxia Foundation Annual Membership Meeting in Seattle, WA on March 20, 2009.

Download the application here.

RAIII Registration is NOW OPEN!

Registration for Ride Ataxia III is now open! Registration is facilitated by active.com and is easy, quick and secure. Register HERE!


If you would like to find out more before you register please visit "About Ride Ataxia" download and browse the pre-ride information packet or check out the Ride Ataxia III Flyer.

Kyle's Story

“Little did I know this was just the beginning and this disease would lead me to things beyond my imagination.”

For the first half of my life I had no idea that I had Friedreich’s Ataxia. I played sports and carried on just like other kids. When I was thirteen, watching me play baseball, my Dad noticed that something was wrong. In the beginning, my family simply called it clumsiness, but as my coordination and muscle control continued to deteriorate, we started looking for answers. After a year of searching, my family and I were unsettled with the diagnosis of FA not knowing what this disease would bring to our lives.

Many Ataxians are all too familiar with that helpless feeling, the “there’s nothing we can do my life is over” feeling. Two and a half years ago I had that feeling when FA had progressed to the point that it was unsafe for me to continue riding my bike. I was quite frustrated and I figured this is the beginning of the end. Little did I know this was just the beginning and this disease would lead me to things beyond my imagination. I found a trike and started riding. I fell in love with the freedom that came with it. I decided I wanted to do more. I wanted to do something huge that would be life changing for me and that would be an inspiration to all suffering from the effects of Ataxia. So teamed with my family and some close friends we made a 2,500 mile journey from San Diego to Memphis on bike to the National Ataxia Foundation Annual Membership Meeting. We had so much fun on that trip we decided to do it again the following year this time Sacramento to Vegas. Our Vegas trip was amazing because many people came together to participate and fight this disease.

Currently, there is no treatment or cure for Friedreich’s Ataxia. However, I find that strenuous exercise is the best treatment for me. Cycling boosts my physical, mental and emotional strength. Although Ataxia is slowly impairing my physical ability, I have never felt better than I do after a long ride. Cycling is my therapy. When I feel frustrated I can crank out 30 or 40 miles leaving all my frustration on the bike trail. Cycling has boosted my confidence. Cycling gives me a platform to address Ataxia with friends and coworkers. I am proud of my ability instead of ashamed of my disability.

I have found that life is not over and there is much I can do. I am confident that the doctors and researchers are doing all they can to find a treatment or a cure. Until we find a cure, I plan to have fun staying healthy and active as I fight this disease.

About Ride Ataxia

The Ride Ataxia Cycling Team has traveled 3,100 miles in the past two years raising invaluable ataxia awareness and bringing together $350,000 in research funds in collaboration with the National Ataxia Foundation and the Friedreich’s Ataxia Research Alliance.

The mission of Ride Ataxia is to Educate the public about ataxia by drawing attention through acts of physical endurance, Enable the advancement of ataxia research through collaborative financial support and Empower Ataxians by inspiring, motivating and providing opportunities to develop physical and mental strength.

Ride Ataxia I
In January 2007 Kyle and his recumbent tricycle were joined by his dad Mike, his Uncle Steve, fellow Ataxian David (Spinner), his elementary school friend Andy and other dedicated supporters for the 2,500 mile ride from San Diego to Memphis to raise awareness and research funds for Friedreich’s Ataxia. The trip was a HUGE success! Despite knee injuries, harsh weather and other challenges, the team visited FA researchers and patient families along the way, and made it to Memphis on time and in good health. The team raised more than $40,000 and even more exciting was the uniting of the National Ataxia Foundation (NAF) and the Friedreich’s Ataxia Research Alliance (FARA) for the first time ever. Both of these internationally-reaching organizations contributed matching funds creating the $100,000 Kyle Bryant Translational Research Award. By June 2007, the grant was awarded to Dr. Nuri Gueven at Queensland Institute of Medical Research in Australia for research into the catalytic antioxidant CTMIO as a possible treatment for Friedreich's ataxia.


Ride Ataxia II
Ride Ataxia II started on March 15, 2008 in Sacramento, CA and traveled 650 miles in 13 days to the National Ataxia Foundation Annual Membership Meeting in Las Vegas, NV. The ride involved many new teammates including six Ataxians. The team was 50 riders strong for the first day and 21 participants finished as a team at the Flamingo in Las Vegas. Ride Ataxia II raised invaluable awareness and $142,000 for friedreich’s Ataxia research. Once again the National Ataxia Foundation (NAF) and the Friedreich’s Ataxia Research Alliance (FARA) helped fund two Kyle Bryant Translational Research Awards for $125,000 each. One award was to Repligen Corporation, Waltham MA, who in collaboration with an international team of researchers is advancing compounds called HDAC inhibitors that target increased levels of frataxin – the protein that is severely reduced in FA. The second award went to a team of investigators at Ohio State University, Drs. Subha V. Raman and Roula al-Dahhak, who propose a series of sophisticated imaging studies to better understand, prevent and treat heart disease in FA.

Ride Ataxia III
Ride Ataxia III will start in Portland, OR on March 16, 2009. The Ride will travel 200 miles in 4 days to the NAF Annual Membership Meeting in Seattle, WA. The ride will be fully supported with freshly stocked rest stops every 25 miles and Sag vehicles roving the course for safety. The team will have meals together in the morning and the evening and will stay in low cost motels to keep expenses low. The fundraising goal for Ride Ataxia III is $100,000.
Register For Ride Ataxia III

Foxy's Fall Century

Last Saturday, October 18, 2008, I attempted my second century ride. The final outcome was not as I had hoped but I made some new cycling friends and had a great time.

The night before the ride I had dinner at Matt's place with his family and some friends who were going to do the ride in the morning. Some of us were signed up for the 100mi, some for the 100km, and some for the 50km. We all ate a bunch of spaghetti, garlic bread, salad and pie.

I got up at 530am to start my journey. Arrived at the event at 630. We all signed in and were on the road by 730.


It was a chilly morning as we headed west out of Davis, CA. We turned south down a farm road and saw a spectacular scene of sprinklers in the morning sun, these biker chics really wanted to be in my picture:


I pushed pretty hard for the first 25 miles to the first rest stop where we refueled with bananas, bagels and Fig Newtons.

After the rest stop we took it a little easier for the next five miles. At mile 30 the trails split. Those who chose to do the 100km went one way and we went the other. So we bid farewell to two of our teammates and went our separate ways. At this point I just started to feel some discomfort in my right knee.


A few miles down the road, we took a wrong turn which took us up a crazy unnecessary climb. By the time we got to the top of the hill my knee was telling me to stop soon. We finally made it back to the course and at mile 50, I decided to call it a day. My right IT band was inflamed and it was just going to get worse so I called my buddy Brian to pick me up in Fairfield, bummer.

Matt, Mia and Dustin continued on to 58 more miles of hills and wind. Matt rides a hand bike, Mia hadn't ridden her bike in quite a while and Dustin was on a fixed speed bike. They are nuts...but they finished! 12 hours and 108 miles after the start, these three finished in the dark!


Matt and Mia looking exhausted


Dustin enjoying his lasagne...don't get that red sauce in your moustache!


I saw a couple other Ride Ataxia Teammates that day. I ran into Roberto in the morning, he was sporting his Ride Ataxia jersey. Roberto was unable to sign up that day (just missed it) so I saw him on his way to do a few miles on the bike trail.

I ran into another guy sporting the Ride Ataxia Jersey. I found out that Ashley Hartigan is his niece and he is doing his part to raise awareness.

I was also fortunate enough to get a picture with a couple other teammates after they finished the century. Nice work ladies.


Terry, Me, Crit


I am going to take a few weeks off from cycling to get my knee back into shape but please stay tuned there is a lot going on. Registration for Ride Ataxia III will be available in early November!

DE:TERMINENCE

Sean Baumstark (27, FA) was a huge contributor to Ride Ataxia II. Because of his experience with Ride Ataxia and the huge support he has received from friends, family and coworkers he has started an effort to push the limits of one's personal physical ability. The effort is called DE:TERMINENCE and it launched on September 28, 2008 at the Autism Speaks fundraiser at the UC Davis M.I.N.D. Institute here in Sacramento, CA.

Peregrine Bike Works

This is my 100th post! How appropriate that I am writing about the place where it all started, Peregrine Bike Works (PBW) in Chico, CA.

I visited PBW today. The owner, Hugh, hosted an open house. He had more trikes than you could imagine in one place.

It was a great place to go to test ride the best trikes as my need for speed develops.

Here is a list of all the trikes I saw today at PBW:

** Recumbent Tadpole Trikes **

ICE:
Q with mesh seat & 20" rear suspension wheel,
Qnt with hardshell seat & 20" rear suspension wheel,
Qnt with hardshell seat & 26" rear wheel,
T with mesh seat & 20" rear suspension wheel;

Greenspeed:
X5 (16" wheels, sport folding),
GT3 (16" wheels, touring folding),
GTO (20" wheels, touring take-apart);

Catrike:
Trail (20" wheels front & 20" rear),
Speed (16" wheels front & 20" rear),
Road (20" wheels front & 20" rear),
Expedition (20" wheels front & 26" rear),
700 (16" wheels front & 700c rear);

HP Velotechnik both 20" wheels and rear suspension:
Scorpion (20/20 aluminum frame w. suspension,
Scorpion FX (20/20 aluminum frame w. suspension & folding)

Wizwheelz (Terra Trike):
Cruiser (20/20 - steel frame fits the budget conscious);


** Recumbent Delta Trikes **

Hase:
Kett-Wiesel (27-speed, aluminum frame),
Lepus Comfort (14-speed w. Rohloff);

Greenspeed:
Anura (18-sp, with differential and Schlumpf Speed-Drive);

Sun:
M3-UAX (budget)

There was a lot to choose from to say the least.

I am looking for a bit more speed. Currently, when I am in my highest gear I sometimes find that I could use one or two more gears to power the trike at higher speeds. Higher gearing mainly means that I need a bigger wheel in the back (drive wheel).

So I mainly looked at two different trikes: the ICE Qnt with a 26" drive wheel and the Catrike 700.

ICE Qnt with 26" drive wheel

This is the same trike that I ride currently except that it has the 26" drive wheel. I was naturally very comfortable on this trike because it rides just like the one that I have ridden for 7,000 miles. I love the feel of the steering and I am a firm believer in drum brakes which come standard. I love my current trike, it is very dependable, solid and comfortable. The fact that I could get higher gearing from the same trike is very attractive.

Catrike 700

The main attraction for this trike is the 700c drive wheel. This huge wheel will not only allow higher gearing but this is the standard wheel size for upright road bikes. Therefore this trike will accommodate a standard racing wheel at a reasonable price. One can save a lot of wind resistance with blade spokes or a full carbon fiber disc in the rear.

This trike is much lower to the ground making it more aerodynamic. However the seat angle does not adjust so one needs to be comfortable with the laid back position and reduced vision.

All Catrikes have direct steering. The feeling is way different than the indirect steering on my ICE. This would take some getting used to. Also Catrikes feature disc brakes and do not offer drum brakes which would be a consideration for me.

Thoughts
These are both great trikes. The bottom line is that I want to find the fastest trike available. The true test would be to take each of them out on a 10 mile time trial, may the best trike win...maybe next time.

Along with the trikes we saw other great items such as this crazy contraption:


Somebody showed up with this great traylor hitch rack, which doubles as a sweet display stand for trikes. Hugh does not carry this product but I'm sure if you are interested, he could find it for you.


It was a great event and PBW is a great place. I believe Hugh will ship a product anywhere in the country (World?). If you are interested in a trike just visit the PBW web site or stop by for a test ride if you are in the area. Say hi for me.

International Ataxia Awareness Day

Today (9/25) is International Ataxia Awareness Day.

In recognition of this day my Cousin Angela Greene and her husband Ricky Greene held a fundraiser. The fundraiser was held last Saturday in Martinez at the Greene Residence.

Angela and Ricky spent months preparing their new home for the event and the place looked great. They had 5 tables full of silent auction items and 4 tables of raffle prizes. The silent auction items ranged from gift baskets full of wine and cheese to sports memorabilia such as a football signed by the Raiders. The raffle prizes ranged from gift certificates to local restaurants to a Ride Ataxia Jersey. Most of the items were donated by friends and businesses in the Martinez community.


Dinner was provided courtesy of Outback Steakhouse and featured chicken, steak, greens, marinated mushrooms and mashed potatoes (my mouth is watering). Thanks to Outback we were able to cut costs big time and provide an outstanding meal, Thank You.


We estimated that there were about 80 people in attendance and we raised a total of $7,200! 100% of this money will go to the collaborative research efforts of the National Ataxia Foundation and the Friedreich's Ataxia Research Alliance. On top of that, I think we may have recruited a few participants for Ride Ataxia III.


We all had a great time with old friends and we made some new ones too.


A special thanks to Ricky and Angela for their hard work and dedication, you are truly making a difference.

Dream Hope Believe

On Saturday 9/13 a local ataxia family held a fundraiser at a local seafood restaurant. The event featured a silent auction, music, friends, drinks and as much crab as you could eat.

The event benefited the Friedreich's Ataxia Research Alliance and was organized by family and friends of Ashley Hartigan. Ashley is a 12 year old who suffers from Friedreich’s Ataxia. FA has robbed Ashley of the ability to participate in most sports, keep up with her friends and she struggles more each day to walk.

There were more than 200 people at this event and tickets sold out more than a month in advance. There is a lot of support for the Hartigan family in this community. The goal was to raise $25,000. I do not have the total at this point but by my estimation, the goal was reached.

The best part about the night was a presentation by the 20, 30 Club. Friends of the Hartigans had told Ashley's story and the 20, 30 Club decided to take action. They funded the purchase of a trike so that Ashley can ride bikes with her friends and stay in shape.


It was a great event and I am looking forward to next year!

Cyclebration

Last Friday I participated in my first Cycling Race. It was a 10 mile Time Trial. The Time Trial is a lot different than my regular rides because it is all out, as fast as possible for 10 miles. I feel like I got a two hour work out in about 35 minutes, I was feeling a little queasy at the very end but I held it down for a strong finish.

I raced among other Disabled Athletes who all happened to be on Handbikes. We had a lot of fun representing Disabled Athletes. There were 6 of us but we hope to have a much stronger showing next year.

Matt Strugar-Fritsch, Me, Chris Houde

Around The Lake

Lake Tahoe is the second deepest lake in the United States and the tenth deepest in the world, with a maximum depth measured at 1,645 ft (501 m), average depth of 1,000 ft (305 m). Crater Lake in Oregon is the deepest lake (1,949 ft or 594 m) in the United States. Please Note that the depth of Lake Tahoe changes every day as the lake level changes.
Lake Tahoe is about 22 mi (35 km) long and l2 mi (19 km) wide and has 72 mi (116 km) of shoreline and a surface area of 191 mi2 (495 km2). The floor of the Lake Tahoe Basin is at an elevation of about 4,580 ft (1,396 m), which is lower than the surface of the Carson Valley to the east! With an average surface elevation of 6,225 ft (1,897 m) above sea level, Lake Tahoe is the highest lake of its size in the United States. - USGS

Team Ride Ataxia Has Conquered Lake Tahoe!

On Sunday teammates Sean, Greg, Crystal, Mike, Glenn, Doug, I and a few others left Stateline (CA, NV) at 8am heading clockwise around the huge lake.

The group took off and I immediately fell behind (I have plenty of excuses: heavy bike [40 lbs], three wheels [more resistance]...). Crystal stayed back with me and about 5 mi into the ride her back tire went flat. After fiddling around for a while we realized that my pump would not work so we had to flag someone down and borrow a pump (always check your equipment before you hit the road). We lost about 1/2 hour but we got back on the road knowing that this would not phase us.

At mile 13 we hit the "Emerald Bay Switch Backs" that we had been warned about. This hill was super steep but fairly short so we powered through to the Emerald Bay Vista Point:

This is one of the most beautiful spots...ever. However, there was no time to admire the beauty, we had to keep moving so we quickly snapped this photo and jumped back in the saddle.

We hit the first rest stop a couple miles later after a screaming downhill (33mph). We devoured some cantaloupe, strawberries, pretzels and bagels before adding a little more pressure to Crystal's rear tire and we were off again.

Rolling hills are what we encountered for the next 25 miles. We were at lake level for a bit then climbed Dollar Hill and traveled back to Lake level at Kings Beach for lunch. At mile 40, we had covered more than half the total distance but we had spent much less than half the effort required to finish. At that point, my knees were aching a bit which made me a bit nervous but we pressed on resisting the urge to jump in the water at the beach.

We passed through Incline Village which is home to some of the most impressive houses (mansions) in the Tahoe Basin. Then we started the climb. This climb started at about mile 55 and lasted for about 12 miles. Nobody told me about this one...So I cranked it down to my granny gear and grinded out the twelve miles in about an hour and a half. As I was climbing, the outside corner of my left eye began to burn, I thought "shoot, sunscreen in the eye." Then I remembered that I purposely avoided my forehead when applying sunscreen. I realized that my head was so drenched in salt-saturated sweat that it was dripping in my eye and causing a terrible burning sensation...hooray!

My climbing pace is very sluggish (heavy bike, three wheels) so Crystal went ahead and waited for me at the top of the hill. We formed our two person Peleton and headed down the big descent (12 miles to go). During this descent on State Highway 50 we hit speeds over 30 mph while riding the breaks. The road had just been re-finished which made those speeds very enjoyable.

There were rolling hills for the last 5 miles then we finally reached the finish line. We were just about the last ones to finish, but they were not giving out awards for fast times and I think we had just as much fun as everyone else...mission accomplished!


Special thanks to Lyle and Joyce Miller for providing a roof over our heads the night before the ride.

Bow Flex

I am preparing for the Tour de Tahoe on September 7. Team members Sean, Mike, Glenn, Crystal, and Terry are going to participate as well.:

"The 72-mile Tour de Tahoe – Bike Big Blue course circumnavigates the highways clockwise around Lake Tahoe in both Nevada and California. It includes a challenging 800-foot climb to a rest stop overlooking Emerald Bay and a 1,000-foot climb to Spooner Junction. There are also many short rolling ascents and descents totaling over 2,600 vertical feet of elevation gain! The altitude ranges between 6,300 feet and 7,100 feet above sea level and the ride is recommended for conditioned recreational bicyclists, not for beginners."

I am not in cycling shape. The summer heat combined with smoke from the local wildfires combined with a degree of laziness has created many excuses to do lots of other stuff rather than get in shape. However, I am making a last ditch effort to log a few miles before the ride.

Along with cycling, I am adding strength training to my routine. I hate going to the gym (there is a lot of wasted time getting motivated, making the trip over there, finding a parking spot...). So I decided to streamline the process and bring the gym to me.

Uncle Steve has been using his Bow Flex for about ten years. He is a monster downhill/back country skier and he logs thousands of miles every year on his mountain bike. Uncle Steve is a fine physical specimen at 59 years old and I figured it must be the Bow Flex (and his obsession with fitness) that keeps him in shape.

So I searched CraigsList for a used Bow Flex. I found many listings for $800 - $1500. However, there were a few listings with prices in the $200 - $300 range (these are offered by people who bought a Bow Flex a few years ago, never used it and now they just want to get rid of it).

I called on a listing that was offered for $250, the guy said he was willing to lower the price to $200 as long as I would come pick it up. So the next night I drove about 30 miles to go check this thing out. The guy (Kevin) asked me why I was shopping for a home gym. I told him about FA and the ride. He wanted to donate so he gave me the Bow Flex for $100. He said that if his wife didn't need her hair done he would have given it to me for free. Thanks Kevin, I hope to put the Bow Flex to work.

I just set it up in the garage yesterday and I have not had the chance to try it out but I hope to make regular use of it...we'll see how it goes.

Pay Off

This is what it's all about...Results! We are truly making a huge difference here.

The collaboration between Ride Ataxia, NAF, and FARA is amazing. We started working together just over two years ago and we have already funded $350,000 worth of promising Ataxia research!

We funded one research award last year, that one was chosen from ten proposals. We are funding two awards this year chosen from eight proposals. Three awards given among 18 promising applicants! Who even knew there were 18 new ideas for Ataxia research? Researchers all over the world are bringing their ideas to the table for this award. There is some real excitement here and the collaboration of these three organizations is capturing the excitement and producing results!

FOR IMMEDIATE RELEASE

$250,000 in Kyle Bryant Translational Research Awards Announced Today

August 6, 2008 — The National Ataxia Foundation (NAF) and the Friedreich's Ataxia Research Alliance (FARA) announced today that, this year, they are co-funding two $125,000 Kyle Bryant Awards that are going to promising translational research in Friedreich’s Ataxia (FA). One award is being made to Repligen Corporation, Waltham MA, who in collaboration with an international team of researchers is advancing compounds called HDAC inhibitors that target increased levels of frataxin – the protein that is severely reduced in FA. The second award goes to a team of investigators at Ohio State University, Drs. Subha V. Raman and Roula al-Dahhak, who propose a series of sophisticated imaging studies to better understand, prevent and treat heart disease in FA.

Repligen’s research proposes to develop methods to use with the FA mouse models in order to select which HDAC inhibitor will be best to test in FA patients and what doses of that HDAC inhibitor will be most likely to maximize frataxin protein levels while minimizing toxicity. Drs. Subha V. Raman and Roula al-Dahhak, recognizing that heart disease in FA is poorly understood, have focused their research project on testing new ideas regarding how heart disease develops in FA, earlier detection of the heart disease, and development of new prevention and treatment strategies that would reduce heart-related disability and death.

These two research projects were selected from eight excellent applications that were peer-reviewed and then ranked by FARA and NAF scientific advisors. The Kyle Bryant Translational Research Award was established in honor of Kyle Bryant, the courageous young man who has Friedreich's ataxia and formed Ride Ataxia. Ride Ataxia has helped increase awareness regarding FA and raise invaluable research funds for FA research. The Ride allows motivated individuals to experience and advance the fight against this debilitating disease. In 2008, Ride Ataxia II began in Sacramento, CA and ended in Las Vegas, NV at the 51st NAF annual membership meeting. Bryant and Ride Ataxia II teams raised over $140,000 to support the award. NAF and FARA announced at the end of the ride that the two organizations would add sufficient funds to bring the total of the 2008 Kyle Bryant Translational Research Award to $250,000.

NAF Executive Director Michael Parent commented, "The National Ataxia Foundation is truly grateful to Kyle Bryant and the other riders and supporters of Ride Ataxia II in making it possible to help fund two $125,000 quality research studies. Their efforts give hope for today and a promise for a brighter future for those affected by ataxia and their families." FARA President Ron Bartek added, "Kyle’s courage, commitment and dedication, reinforced by a growing number of his family members, friends, supporters and others with FA, have again inspired and enabled FARA and NAF to collaborate in co-funding exciting new FA research. With all of us working together like this, we will develop treatments and a cure. This Kyle Bryant-FARA-NAF collaboration is accelerating that accomplishment." Ride Ataxia II, launched in Sacramento, CA on March 15, 2008 with 50 riders, and logged about 60 miles a day, arriving in Las Vegas on March 28, 2008. Bryant kept a blog describing the adventures along the way: http://rideataxia.blogspot.com

"There is an optimism in our community of Ataxians. Many people think that we can actually beat this thing. I am confident that our brilliant doctors and researchers are doing all they can to find a treatment or a cure. Until we find a cure, Ride Ataxia will continue to promote an active and healthy lifestyle for all Ataxians." said Bryant.

Friedreich's ataxia is a rare, life-shortening, debilitating, genetic, neurodegenerative disorder. Onset of symptoms usually occurs between the ages of 5 and 15. Symptoms include muscle weakness and loss of coordination in the arms and legs; impairment of vision, hearing and speech; aggressive scoliosis (curvature of the spine); diabetes, and a serious heart condition. Most patients need a wheelchair full-time by their late teens and die as young adults. There is currently no treatment or cure.

About FARA
The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich's ataxia. http://www.curefa.org

About NAF
NAF is a membership supported, nonprofit organization established in 1957 to help persons with ataxia and their families. The Foundation's primary purpose is to support promising ataxia research and to provide vital programs and services for ataxia families. http://www.ataxia.org

Contact
Ronald Bartek
President, Friedreich's Ataxia Research Alliance
(703) 426-1576
fara@curefa.org

Michael Parent
Executive Director, National Ataxia Foundation
(763) 553-0020
mike@ataxia.org

Kyle Bryant
Founder, Ride Ataxia
(916) 203-3238
kyle@rideataxia.org

The Berserker

Trikes are meant for the open road...or so I thought until a friend pointed me toward the BERSERKER and I came across this video. I don't know much about it at this point except that it is being developed by a professor at Cal Poly San Luis Obispo. It looks very durable and stable, potentially a lot of fun!



A little more information in a press resease here.

Outback Charity Golf Tournament

I had a dream day on Monday. I took a drive down to the Outback Steakhouse Charity Golf Tournament in Pleasanton, CA. The Tournament was a fundraiser for MDA (Muscular Distrophy Association). Friedreich's Ataxia is one of the many diseases under the MDA umbrella. A large portion of the money raised on Monday is going directly to FA research.

Pat Kruk of Outback Steakhouse invited me to attend and I had a blast all day. I arrived at around 10am while the participants were showing up. I chatted with Pat for a while and then the tournament host John Madden showed up, yes the John Madden. I met Coach Madden and Pat told him that I had been riding my bike to raise funds, he said "You are strong." Coach was pulled away for a TV interview but not before I took advantage of the photo op:



Pat got a golf cart for me and I cruised the course with my friend Laurel meeting people and shooting the bull. There was food and drink at every hole so Laurel and I drove around all day eating and drinking Mai Tais, Ribs, Lemonade, Hot Wings, Long Islands, Seared Ahi...




On the course we hung out with Phil Bennet (24, FA) and other celebrities such as Tom Keating former All-Star Oakland Raider


And two-time Pro Bowler and four-time Super Bowl Champion, former San Francisco 49er Eric Wright.


At the end of the day, we had a great dinner Courtesy of Outback Steakhouse and a few words from Coach Madden. One of the goals of the day was to raise money to send kids to MDA Summer Camp. It costs around $500 to send a kid to camp for a week. So a few of the kids got up and told their stories...within about 25 minutes the MDA had collected 65 pledges to send kids to camp, that's over $30,000 in less than half an hour...amazing.

The tournament was a huge success ($150k all together) and we all had a lot of fun. Many thanks to Pat Kruk (Below, Right) and Outback Steakhouse!

Water Skiing

Yesterday I went waterskiing for the first time in about 8 years. My family owned a boat when I was young and we would go skiing, kneeboarding and wakeboarding weekly during the summer. During highschool a close friend of mine got into wakeboarding and we worked as lifeguards at a lake so we went wakeboarding several times a week.

As FA continued to progress I gave up wakeboarding and boating sports. I remember the last time I went wakeboarding, it was a struggle to get up and then I just wobbled like crazy until I went down with a splash.

On Saturday Disabled Sports USA Far West made it possible to experience boating sports again.

I pulled up to the lake at around 9am. This lake is a tiny little puddle made specifically for competition water skiing. It is only like 10 feet deep at the center, just deep enough for the boat. The lake is located at Pleasant Oak Ranch and the owner generously donates the use of the lake several times a year for DSUSA.

I met my instructors and we did a quick diagnosis to see whether I should try stand up skis or not. They asked me to stand on one foot, I could not, so we busted out the sit-ski. To me this thing looked kinda uncomfortable and lame. I soon found out that is actually quite comfortable and it rips! They fit me to a "cage" (the thing that you sit in) and it fit snug around my hips. The cage is bolted to the ski just like wakeboard bindings.

In the water I had an instructor, Brian, help me into the cage and then he helped me stabilize until the boat took off. I had a tough time starting, it took a couple tries and then I got it. I was up, skipping along at about 17mph. The sit-ski that I had was quite stable and the ride was effortless. It all came back to me, like riding a bike. I carved outside the wake then cut back, slowly at first then I started getting comfortable.

I cut out and back hard this time. I caught air on the wake and came down a little sideways. I swerved a bit then went down face first, water up the nose.

I had not realized how much I missed that terrible burning feeling in my nose...WOOHOO! I got up again and repeated the thrill, this time I cut a little harder and got a little higher, awesome...


I am stoked to discover boating sports again and I will definitely be back for more this summer. I am going to try a different ski, a more high performance ski that will allow me to edge a little more and cut harder...stay tuned!

F.A.I.T.H. and Sky Diving

This was a super packed weekend.

On Saturday morning I rode my bike down to Discovery park and went on a ride with some fellow disabled athletes, one of which was one of the fastest hand cyclists in the world Alejandro Albor who is currently training for the Paralympics in Beijing. We had a great ride and introduced many disabled athletes to the world of Cycling. This event was run by Disabled Sports USA Far West. Check out their Summer Programs.

That night part of the Ride Ataxia II Team (Me, Tess, John Lockwood, Sean, Mike M., Mike B.) traveled to Sunnyvale (South Bay Area) to support a teammate (Bart) and his family during their fund raiser, FAITH (FA In The Heart. This was truly a truly first class event. Dinner was courtesy of Outback Steakhouse. There was a great silent auction with some really impressive items. A live auction featuring a Bar-B-Q for 50 friends, a weekend condo in New York City, and a week in Hawaii (all separate items...). Matt Rupel (17, FA) gave a really nice speech. Phil Bennet (23,FA) presented a check for over $7,000. And I was given the opportunity to tell my story to the crowd. The evening's emcee was Sam Van Zandt of KBAY 94.5. Afterward there was an open bar and music by a truly talented cover band, Millenium Funk Party. We all had a great time meeting new friends and enjoying teammates. On top of all that, the event raised a lot of money, >$50K!

The next day (Sunday) I experienced one of the craziest things. I went Sky Diving with my friends Phil (23, FA), Brianne (3?, FA (that's lame, I don't know how old Brianne is)) and Eric. My Dad, Mike, and Brianne's Dad, Paul, Jumped too which was quite amazing, I had no idea they even wanted to.


So as I was saying, this was a crazy ride. Yes, we were strapped to an experienced professional but we still jumped out of a plane at 13,000 feet (2.5 miles).

The plane seemed to take forever to reach the right altitude. I was pretty mellow. Phil was sitting on the ground right by the plexiglass door so he got a closeup of what we were about to experience. Phil has now jumped 3 times and Brianne has jumped 18 times so they were cool and calm the whole time, I think Paul and Mike were the most freaked.

We finally reached 13,000 feet and they opened the door. Then it all went down. Loud wind and screams of terror and excitement as Phil took the plunge. That's when I finally started getting pretty excited (completely horrified). Brianne was right in front of me and she flew out into the chilly wind.

My heart is pounding just looking at this picture.

Then it was go time, before I had time to reconsider we did a somersault out of the plane and I watched as the plane got smaller above me, that was the most terrifying 3 seconds of my life.

Then we turned over and started falling at about 100mph. There was a guy in front of me filming and taking still photos, I looked at him and relaxed a bit (what the heck, falling to the earth, looking another human being in the eye, this is wierd). After a couple seconds I got a little more comfortable and truly enjoyed the next 20 seconds.


The chute finally opened and I realized how fast we were going as I saw the photographer fall away at 100mph.

haha, nice out of control chicken legs

I could see forever as we were still at 3,000 feet.

We did some spirals and made it to the ground quickly to help the others land.



Everyone got down safely and we walked away with an amazing experience. Our jump at Parachute Center in Lodi, CA was worth every penny.

As we were sitting around afterward we were already planning our next jump...

Press

Check out this article by Dave Moller at The Union. Nicely done as always: Ataxia Rider on the Attack

Research Funds

After a little vacation from Ride Ataxia I have had time to reflect and begin to plan next year's event. No details yet but the ride will go on in late March 2009. But lets not get ahead of ourselves here. We are still celebrating our success from Ride Ataxia II. And a huge success it was!

Money kept rolling in until a couple weeks ago and our total now is $135,000! That is unbelievable! This huge number is due to the fact that we had so many enthusiastic team members who were fund raising machines. We had 42 registered participants and 50 cyclists the first day, everyone pitched in to make it happen.

The success story does not stop there. The National Ataxia Foundation and the Friedreich's Ataxia Research Alliance are going to announce tomorrow (Monday, Cinco de Mayo) that they are going to contribute equal amounts to bring our total to $250,000 (one quarter of a million dollars)! This money will be used to fund two $125,000 research grants. The Request For Proposal (RFP) and Application for the grants will be available on either of their websites (ataxia.org, curefa.org) and I will link it here too.

The grants will target "translational research." Research that seeks to take a treatment from the laboratory to ataxia patients like Me, Sean, Spinner, Linda, Sam and Beth just to name a few. These grants are on the fast track to be collected, reviewed, awarded and distributed by August 2008. We are getting money to the researchers as fast as possible. More details will be available in the RFP.

This is absolutely incredible how it has all come together. Our team had a lot of fun raising a ton of valuable research money and we are grateful to be collaborating with two great organizations.

Linda's Blog

Hey Everybody, please check out http://www.lindasride.org/ for reflections and wrap up discussions from this year's event. Good stuff.

We Made It!

It has been a crazy day and I am desperately in need of some shut eye.

The climb yesterday was not easy. 18 miles at 4% grade and then a 7 mile downhill nd then another 7 miles up at a 4-5% grade. We climbed over 4,000 feet in 32 miles. (During this trip we climbed over 8,000 feet!) Then it was downhill to finish the 50 miler.

This morning we left at about 730am from Primm Nevada. We left so early because we needed to get to the Flamingo no later than noon. It was an easy 39 miles and we arrived ahead of schedule. We gathered about a mile from the hotel then cruised as a group (21 of us) into the hotel. It was pretty powerful to travel with the team, taking up a lane along a busy street amongst these huge hotels.

When we got to the Flamingo we had great support from many Ataxinas, families and researchers. The NAF did a great job orgasnixing the event. Check it out on Las Vegas News 8. (there's a video to the left of the page)



I appologize that the blog is not the same as it was last year. The ride was way more intense this year and it left me with no time or energy at the end of each night. Last year there were only about four of us and I could spend all night writing a blog. This year I was busy enjoying the company of my teammates and then getting up early every day to get on the road. This year we had no rest days so we rode through pain and fatigue. I left out a lot of details but you can be assured that we had a lot of fun and made a huge impact. For now our team gets to bask in the glory of our victory and we look forward to our next challenge...stay tuned for updates about the research that we will be funding.

Nearing the Finish Line

I screwed up in the last couple of posts, I numbered the days wrong but this post is back on track.

Day 10
Boron to Calico
55 miles

Day 10 featured a new trike on the road and he (Sam) did great.

Most of the day was flat and easy until we got on highway 40 heading east. We started flying because we had a nice wide smooth shoulder. Then all of a sudden I lost all power on my trike, my cranks started spinning freely and I realized that the master link had come loose and my chain had fallen apart.

So I slowed down and apparently I stopped too fast which led to a pile up behind me. Collin hit Dad, Jina hit Collin and fell partially into the road. She was still hooked in to her pedals so I grabbed the wheel of her bike and helped pull her out of the road. She survived with nothing but a few scrapes and bruises and I plan to slow down more gradually next time.

Back to the masterlink: This has happened before and it is no problem as long as we can find the masterlink (I think I just like using the term "masterlink"). One piece of the link was still in connected to the chain but the other piece had fallen off. So we had to scour the shoulder of the freeway to find a tiny piece of metal amongst all the other tiny pieces of metal and bits of tire and dirt and broken glass and cigarette butts that reside on the shoulder of the freeway. Miraculously sean spotted the tiny piece after two people had already passed it by. So after a bunch of grunting, sighing and heavy breathing, we wiped our greasy hands on our shirts and continued pedaling. The freeway was great, I hit a top speed of 31mph and we cruised for about 10 miles. Then we took the offramp and headed toward Calico Ghost town. A tough 3 mile climb to end the hot day...


This town was a silver mining town from 1880 to 1895 and now is a museum.

Tess on the Jack Hammer

We had a team meal at the on site RV park

Feeding frenzy (a hotdog never tasted so good, actually three hot dogs never tasted so good)

And we stayed in the bunk house

Collin and Buford waking up in the morning, 830 am start every day

The view from the porch of the bunk house


Day 11
Calico to Baker
55 miles

Today we took off from the bunkhouse and immediately headed downhill hitting top speeds for the trip, for me it was 32mph. We turned left onto a frontage road and the tailwind was spectacular, we cruised at 18mph for about 5 miles. Then the road started to get rough, so rough that I was afraid my trike was going to fall apart. By mile 14, we found out that there was a bridge out ahead so we hapily opted for the freeway against the advice of the signs that said no cyclists. As we were cruising at 20+ mph a CHP car passed us so we figured we must be ok to travel on the freeway. We cruised so fast that we beat the lunch wagon to the halfway point. A quick tuna sandwich and we were back on the road. The wind switched on us in the afternoon but it kept us cool in the desert heat. We had a few short climbs but it was mostly downhill. We reached the motel at about 2pm and everyone jumped in the icy water at the pool, our personal Oasis...


Tonight we are staying in the town of Baker, home of the tallest thermometer in the world, it read 83 when we rolled in.


We ate at the legendary Mad Greek Restqaurant, good stuff


Tomorrow:
We will climb 4000 feet in approximately 35 miles and then cruise downhill into the town of Primm after crossing into Nevada, the silver state. We are all feeling pretty good for the most part. Sean's ankles are really tight and swolen and he has been bearing the pain for the past couple of days. He is confident that he can make the climb tomorrow.

The heat is becoming more of a factor as we go farther into the heart of the Mojave desert so I think we will start earlier tomorrow so we are not climbing at the peak of the heat.

We arrive in Vegas at the North lobby of the Flamingo at noon after traveling 39 miles from Primm that morning...Stay tuned.

Downhill

Day 10
Tehachapi to Boron
49.99 miles

Today we got a little break, downhill all day. We started in Tehachapi and the Tehachapi News met us for a picture.


We had a few miles in the flats and then it was downhill for the rest of the day. We had a strong headwind but we powered through it with gravity in our favor. We completed 18 miles before our first stop and 33 miles before lunch. We cruised into Boron with energy to spare.


Fun Fact: Boron is home to the largest Borax mine in the world.

We will have another trike joining us tomorrow. This is Sam. Sam is getting over a gnarly cold and did not ride today. He will join us with fresh legs tomorrow. We are stoked to have another FA'er on our team.