Awareness is key and as go-time (March 16, 2009) draws nearer we are all pushing for more media coverage. Thanks to a good friend, I was introduced to Rob Stewart. Rob and crew is putting together a new series for our Northern California PBS Station (KVIE). The series is called Rob on the Road and features local stories from Nor Cal.
I met with Rob on a cloudy morning on the American River Bike Trail. Teammates Sean Baumstark and John Lockwood accompanied me. We shot a short piece that will air multiple times this week on KVIE. View the story at: http://www.kvie.org/programs/kvie/robontheroad/video.htm
Also Check out Rob's Blog where he gives a little more insight into the story. Read Rob's blog HERE.
Tuesday, January 27, 2009
Saturday, January 17, 2009
Don't Let Cold Weather Slow You Down!
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:
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:
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
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