Winter is cold! The cold makes everything run a bit slower, including muscles needed for coordination. Ice on the ground is the last straw, I want nothing to do with it. However, winter provides the opportunity to participate in some pretty amazing adaptive sports.
My friend Matt just sent me his latest article that he wrote for Sports 'n Spokes magazine. In the article, Matt presents all aspects of adaptive skiing encouraging all disabled athletes to face the cold and have some fun! Download the article HERE.
Here Are Some Highlights:
"My favorite things about skiing can be summed up in two ways. First, freedom from disability. Skiing makes me feel physically strong, powerful, and free from any limitations. Skiing is a true vacation from muscular dystrophy..." - Lisa Kus (Reno, Nev.)
"I don’t have the balance to carve a mono-ski, and I wanted to be able to ski independently with my friends, so the staff at Disabled Sports took this into consideration and taught me to ski using a dual ski,” he says. “Now I live for skiing fast, deep snow and cold face shots of fresh powder. The equipment needs to progress more, especially developing a better suspension system for the dual ski. But in the meantime, I will continue riding hard and pushing the limits of myself and my dual ski." - Brad Carr (Mt. Hood, OR)
“Adaptive crosscountry skiing is a blast; it’s absolutely addicting, and you simply won’t believe how much fun it is until you try it,” says Bob Vogel, a T10 para from Loomis, Calif. “With this very simplepiece of equipment and a desire to get your heart pumping,Mother Nature puts a big white accessible ramp into the great outdoors,” he says.
"This winter when the snow flies, instead of hiding indoors and wasting time on the couch, take a risk, take a chance. Go outside and try something new. An active body leads to a healthy mind, and winter weather should no longer trigger thoughts of cabin fever. It doesn’t matter what your disability is, with the specialized adaptive equipment available today, the beauty, serenity, smells, and excitement of winter can be yours to enjoy. See you outside!" - Matt Strugar-Fritsch
I also want to share a perspective from a fellow Ataxian who continues to push her personal limits. Dynah Haubert writes about her experiences with adaptive skiing in these two blog posts:
I skied, and now I ski
XC excitement
I am planning a couple Ski trips this year, I am pretty stoked to get on the mountain. It promises to be more fun than last year:
Saturday, January 17, 2009
Sunday, January 11, 2009
In The News
Along with the press release mentioned below, please check out this article from The Grass Valley Union, Grass Valley California. Read the article HERE.
Announcement!
Check it out! This press release is posted as a PDF in the link above (or HERE) so feel free to use it to promote the Ride!
NAF, FARA, Ride Ataxia PRESS RELEASE
FOR IMMEDIATE RELEASE
Cyclist with Rare Neuromuscular Disorder to Begin Third Cycling Journey
January 6, 2009 — Kyle Bryant and Team Ride Ataxia are preparing to begin their third cycling journey to draw attention and raise research funds to find a cure for the rare neuromuscular disorder Friedreich's ataxia (FA) with which Bryant and other teammates are affected.
The team will begin the ride on March 16, 2009 at Oregon Health Sciences University in Portland, Oregon and conclude in Seattle, Washington on March 19, 2009 at the National Ataxia Foundation's 52nd Annual Meeting. It will be a 4-day trip covering 200 miles.
Bryant and Team Ride Ataxia have cycled 3,100 miles cross country in the past two years. In 2007, Bryant and his father, Mike Bryant completed a 2,400 mile bike ride visiting FA researchers and patient families from La Jolla, California to Memphis, Tennessee. In March 2008, the Bryants were joined by many new teammates including 6 ataxians on their bike ride from Sacramento, California to Las Vegas, Nevada.
The funds raised by the team on their cross-country “Ride Ataxia” have gone directly to the annual Kyle Bryant Research Award for translational research in FA. In 2008, the team raised $142,000 and the National Ataxia Foundation and the Friedreich’s Ataxia Research Alliance added sufficient funds to bring the award total to $250,000. Ride Ataxia, NAF and FARA co-funded two $125,000 awards in 2008. One award was made to Repligen Corporation, Waltham MA, which 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.
NAF Executive Director Michael Parent commented, "NAF is excited to again partner with Kyle Bryant, Team Ride Ataxia and FARA for the third annual cycling journey. NAF applauds Kyle and Team Ride Ataxia for their continued efforts to support vital Friedreich’s ataxia research and enhance ataxia awareness. NAF looks forward to collaborating again this year with FARA to help accelerate important translational research in FA. “
FARA President Ron Bartek added, "Kyle Bryant, his family and his Ride Ataxia teammates are real difference makers. These courageous, resourceful and dedicated people have made their cycles into vehicles of change that have vastly expanded the horizons of awareness regarding Friedreich’s ataxia and have significantly increased financial support for Friedreich’s ataxia research. FARA is deeply grateful to Kyle and Team Ride Ataxia and looks forward to the 2009 Team Ride Ataxia/FARA/NAF collaboration that will once again focus increased awareness and resources on the research that will result in treatments and a cure.“
Team Ride Ataxia has set a goal of raising $100,000 towards research for Friedreich's ataxia in 2009. The team is seeking cyclists to join them on their journey as well as sponsors. For information about participation or to make a donation please visit http://www.rideataxia.org. Participant applications and deposits are due February 15.
Bryant stated, “In 2009 Ride Ataxia looks forward to continued success raising awareness, collaboratively funding research, and empowering ataxians and others to seek their fitness goals and have fun doing it.”
Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. Onset of symptoms can vary from childhood to adulthood and can 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. The progressive loss of coordination and muscle strength leads to motor incapacitation and the full-time use of a wheelchair. Childhood onset of FA is usually between the ages of 5 and 15 and tends to be associated with a more rapid progression. 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
info@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
NAF, FARA, Ride Ataxia PRESS RELEASEFOR IMMEDIATE RELEASE
Cyclist with Rare Neuromuscular Disorder to Begin Third Cycling Journey
January 6, 2009 — Kyle Bryant and Team Ride Ataxia are preparing to begin their third cycling journey to draw attention and raise research funds to find a cure for the rare neuromuscular disorder Friedreich's ataxia (FA) with which Bryant and other teammates are affected.
The team will begin the ride on March 16, 2009 at Oregon Health Sciences University in Portland, Oregon and conclude in Seattle, Washington on March 19, 2009 at the National Ataxia Foundation's 52nd Annual Meeting. It will be a 4-day trip covering 200 miles.
Bryant and Team Ride Ataxia have cycled 3,100 miles cross country in the past two years. In 2007, Bryant and his father, Mike Bryant completed a 2,400 mile bike ride visiting FA researchers and patient families from La Jolla, California to Memphis, Tennessee. In March 2008, the Bryants were joined by many new teammates including 6 ataxians on their bike ride from Sacramento, California to Las Vegas, Nevada.
The funds raised by the team on their cross-country “Ride Ataxia” have gone directly to the annual Kyle Bryant Research Award for translational research in FA. In 2008, the team raised $142,000 and the National Ataxia Foundation and the Friedreich’s Ataxia Research Alliance added sufficient funds to bring the award total to $250,000. Ride Ataxia, NAF and FARA co-funded two $125,000 awards in 2008. One award was made to Repligen Corporation, Waltham MA, which 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.
NAF Executive Director Michael Parent commented, "NAF is excited to again partner with Kyle Bryant, Team Ride Ataxia and FARA for the third annual cycling journey. NAF applauds Kyle and Team Ride Ataxia for their continued efforts to support vital Friedreich’s ataxia research and enhance ataxia awareness. NAF looks forward to collaborating again this year with FARA to help accelerate important translational research in FA. “
FARA President Ron Bartek added, "Kyle Bryant, his family and his Ride Ataxia teammates are real difference makers. These courageous, resourceful and dedicated people have made their cycles into vehicles of change that have vastly expanded the horizons of awareness regarding Friedreich’s ataxia and have significantly increased financial support for Friedreich’s ataxia research. FARA is deeply grateful to Kyle and Team Ride Ataxia and looks forward to the 2009 Team Ride Ataxia/FARA/NAF collaboration that will once again focus increased awareness and resources on the research that will result in treatments and a cure.“
Team Ride Ataxia has set a goal of raising $100,000 towards research for Friedreich's ataxia in 2009. The team is seeking cyclists to join them on their journey as well as sponsors. For information about participation or to make a donation please visit http://www.rideataxia.org. Participant applications and deposits are due February 15.
Bryant stated, “In 2009 Ride Ataxia looks forward to continued success raising awareness, collaboratively funding research, and empowering ataxians and others to seek their fitness goals and have fun doing it.”
Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. Onset of symptoms can vary from childhood to adulthood and can 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. The progressive loss of coordination and muscle strength leads to motor incapacitation and the full-time use of a wheelchair. Childhood onset of FA is usually between the ages of 5 and 15 and tends to be associated with a more rapid progression. 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
info@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
Friday, November 14, 2008
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.
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.
Saturday, November 1, 2008
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.
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
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