I got a new trike in April and it is going to allow me to go farther and faster than ever before! The purchase of this trike was made possible by the Challenged Athletes Foundation. For those fellow disabled athletes out there please check out the CAF website for information about how you could receive funding for sporting equipment, entrance fees and travel for competition, and training.
Also, my friend Dynah was funded by CAF this year too, check her new trike out here.
Saturday, June 6, 2009
Monday, June 1, 2009
Research!
2009 Kyle Bryant Translational Research Award sponsored by Ride Ataxia, the Friedreich's Ataxia Research Alliance and the National Ataxia Foundation
June 1, 2009 — The Friedreich's Ataxia Research Alliance (FARA) and the National Ataxia Foundation (NAF) invite proposals, under a competitive Request for Applications (RFA) process, to award grants focusing on pre-clinical and clinical investigations that will advance treatments for Friedreich's Ataxia.
FARA and NAF are grateful to the Ride Ataxia cyclists and supporters as well as sponsor Outback Steakhouse who collectively raised $260,000. FARA and NAF will provide matching funds to bring the grant award total to $360,000. As a result a total of three awards will be funded under this program, each limited to $120,000 (direct costs only). Two awards will be funded by FARA and NAF, and the third award will be funded by FARA made possible by the sponsorship from Outback Steakhouse.
Proposals should be for pre-clinical / translational or clinical research focused on Friedreich's ataxia with aims such as identification of biomarkers for FA, development of animal or cellular models to evaluate candidate therapies, development of tools or technologies for therapy development, pre-clinical development and testing of potential targets, or clinical studies of patient outcome measures.
A full list of proposal guidelines and the application can be accessed at http://www.curefa.org/grant.html. Applicants must complete the Kyle Bryant Translational Research Award application form.
Applications will be accepted from for-profit organizations, non-profit organizations, public or private institutions, and foreign institutions. By July 15, 2009, a letter of intent should be submitted with the title and a few sentences describing the focus of the proposal. The application / proposal is due on July 31, 2009.
Letters of intent and applications are to be submitted electronically to jen.farmer@cureFA.org and susan@ataxia.org.
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
Jennifer Farmer
Executive Director, Friedreich's Ataxia Research Alliance
(484) 875-3015
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
This announcement can also be found on the FARA website here.
Sunday, May 24, 2009
2009 AAI
The Ataxian Athlete Initiative (AAI) is a program aimed to introduce cycling to Ataxians by funding the purchase of a new trike. This year Ride Ataxia received 6 applications from aspiring Ataxian athletes. Unfortunately our resources limited us to a choice of only one recipient. Our panel found the choice very difficult but in the end we were confident that our selection, Nadia Robertson, fulfills the spirit of the AAI with the willingness to stay active and encourage fellow Ataxians to do the same.
"I don't plan to stop exercising until it becomes physically impossible, which I hope is never...I am already a wheelchair user so hopefully I can inspire Ataxians who are on my same level to stay as active as possible."
Nadia Received her trike in early April and has logged quite a few miles since. She has been reaching out to fellow Ataxian Athletes for advice; keeping us in the loop the whole time:
"My ankles had been rolling in my cycling shoes so I bought some tie-up ankle braces today. I talked to Chris Meyer, a fellow FAer who has a trike, and I guess we're closer progression-wise, so he gave me some adaption tips."
With the help of the 2009 AAI we are positive that Nadia is improving her health and confidence.
The future of the Ataxian Athlete Initiative is very bright. We hope to expand the effort with more funding. This will allow us to fund more athletes encouraging our community of Ataxians to stay active!
"I don't plan to stop exercising until it becomes physically impossible, which I hope is never...I am already a wheelchair user so hopefully I can inspire Ataxians who are on my same level to stay as active as possible."
Nadia Received her trike in early April and has logged quite a few miles since. She has been reaching out to fellow Ataxian Athletes for advice; keeping us in the loop the whole time:
"My ankles had been rolling in my cycling shoes so I bought some tie-up ankle braces today. I talked to Chris Meyer, a fellow FAer who has a trike, and I guess we're closer progression-wise, so he gave me some adaption tips."
With the help of the 2009 AAI we are positive that Nadia is improving her health and confidence.
The future of the Ataxian Athlete Initiative is very bright. We hope to expand the effort with more funding. This will allow us to fund more athletes encouraging our community of Ataxians to stay active!
Friday, May 22, 2009
Dr. Perlman
“For 20 years all I could do was tell my patients there were no cures, try to treat their symptoms, and fi ll out their disability forms,” she says. “With the development of molecular genetic technologies and the ability to identify responsible genes and understand their proteins, in the last decade we have begun to design treatments aimed at the disease itself. I am very optimistic about what lies ahead.”
Read more here (page 4): Partners in Discovery
Read more here (page 4): Partners in Discovery
Monday, May 18, 2009
Evan's Walk
This weekend I went to a fundraiser in Cincinnati Ohio in celebration of Friedreich's Ataxia Awareness Day. The fundraiser was a 3K walk/run organized by the Luebbe family. Evan Luebbe was diagnosed with FA when he was 8 years old. He is now 12 and has a much older personality. I hung out with Evan and his family this weekend and had a blast.
The event went off without a hitch because of huge support from community volunteers. This was the 5th year of this event and it showed as everything fell into place. Everyone had a great time with carnival games including a dunk tank (in which they could soak their principal), a silent auction, raffle, lunch from Outback Steakhouse, a short presentation about FA, and a magic show!
Initial estimates are that there were more than 200 walkers/runners and the event raised more than $25,000.
Thanks Luebbes, I had a lot of fun. You are truly making a difference!
Back Row: Felicia DeRosa, Greg Luebbe, Tammy Luebbe, Pamela Rasey Front Row: Graham Luebbe, Evan Luebbe, Me
The event went off without a hitch because of huge support from community volunteers. This was the 5th year of this event and it showed as everything fell into place. Everyone had a great time with carnival games including a dunk tank (in which they could soak their principal), a silent auction, raffle, lunch from Outback Steakhouse, a short presentation about FA, and a magic show!
Initial estimates are that there were more than 200 walkers/runners and the event raised more than $25,000.
Thanks Luebbes, I had a lot of fun. You are truly making a difference!
Back Row: Felicia DeRosa, Greg Luebbe, Tammy Luebbe, Pamela Rasey Front Row: Graham Luebbe, Evan Luebbe, Me
Thursday, May 7, 2009
My New Sport
Its late and I need to get to bed but not before I tell you about my rowing experience.
I became interested in rowing after I heard about these two crazy guys who are going to row across the Atlantic in support of Ataxia UK: http://www.rowingtheatlantic.com/. I love this and I hope they know they've got our support!
I was very intrigued by the proposed journey for Ataxia and as I searched around I found many other people who had made the journey. I spent many hours reading about different journeys across the Atlantic and watching YouTube videos about it. One person I ran across was Roz Savage who gave up her desk job to train and row across the Atlantic. Roz is currently in Hawaii after rowing her first leg of the Pacific from California. The second leg of her Pacific row starts in 16 days.
So there are lots of inspiring stories about rowing and I got interested a while ago but just this week I had the opportunity to try it for myself through a class at the Sac State Aquatic Center. The class was 4 days, 2 hours each night.
Monday night we watched a safety video and then took a boat down to the dock to just sit in it and see what it feels like. I sat in the boat and immediately felt like I was going to tip into the water! I was thinking 'There's no way I can do this. Ataxia is going to make me unbalanced and send me into the water as soon as I get away from the dock.' But our instructor, Rudy talked me through how to stay balanced using the oars as leverage on the water. I was still a bit skeptical but I came back the next night.
Tuesday night we each got a boat and we ventured away from the dock to try some things on our own. I was still quite shaky but when I slowed way down, relaxed and thought about what I was doing it went ok until I lost focus (which was quite often). When I was really struggling Rudy walked me through the things I needed to do and it all came together. Much improvement and some fun.
Wednesday night we spent an hour and a half in our boats and I improved a lot but I also struggled quite a bit. It was a little windy that night and I had to keep correcting my course quite often which meant turning the boat sometimes 180 degrees. This proved to be a challenge as I struggled to figure out the right blade position for my oars. At the end of the night I was exhausted but I could not wait to try it again. It seemed like my skills improved each night as I struggled through the rough stuff and enjoyed the good strokes.
Tonight we ventured even farther into the lake. The wind was blowing pretty hard when we showed up and we almost called it off but the wind died down to a reasonable breeze and we gave it a try. I felt so much more comfortable and confident tonight and these feelings translated into some decent rowing strokes. I had a lot of fun tonight and was much less exhausted because I was actually rowing instead of flailing around.
At the beginning of the week I was pretty freaked out and unstable. I was ready to call it a loss on account of ataxia. However I stuck with it and found that it's just a matter of getting out there and seeing what happens. I look forward to more rowing as I try to incorporate it into my fitness routine.
I became interested in rowing after I heard about these two crazy guys who are going to row across the Atlantic in support of Ataxia UK: http://www.rowingtheatlantic.com/. I love this and I hope they know they've got our support!
I was very intrigued by the proposed journey for Ataxia and as I searched around I found many other people who had made the journey. I spent many hours reading about different journeys across the Atlantic and watching YouTube videos about it. One person I ran across was Roz Savage who gave up her desk job to train and row across the Atlantic. Roz is currently in Hawaii after rowing her first leg of the Pacific from California. The second leg of her Pacific row starts in 16 days.
So there are lots of inspiring stories about rowing and I got interested a while ago but just this week I had the opportunity to try it for myself through a class at the Sac State Aquatic Center. The class was 4 days, 2 hours each night.
Monday night we watched a safety video and then took a boat down to the dock to just sit in it and see what it feels like. I sat in the boat and immediately felt like I was going to tip into the water! I was thinking 'There's no way I can do this. Ataxia is going to make me unbalanced and send me into the water as soon as I get away from the dock.' But our instructor, Rudy talked me through how to stay balanced using the oars as leverage on the water. I was still a bit skeptical but I came back the next night.
Tuesday night we each got a boat and we ventured away from the dock to try some things on our own. I was still quite shaky but when I slowed way down, relaxed and thought about what I was doing it went ok until I lost focus (which was quite often). When I was really struggling Rudy walked me through the things I needed to do and it all came together. Much improvement and some fun.
Wednesday night we spent an hour and a half in our boats and I improved a lot but I also struggled quite a bit. It was a little windy that night and I had to keep correcting my course quite often which meant turning the boat sometimes 180 degrees. This proved to be a challenge as I struggled to figure out the right blade position for my oars. At the end of the night I was exhausted but I could not wait to try it again. It seemed like my skills improved each night as I struggled through the rough stuff and enjoyed the good strokes.
Tonight we ventured even farther into the lake. The wind was blowing pretty hard when we showed up and we almost called it off but the wind died down to a reasonable breeze and we gave it a try. I felt so much more comfortable and confident tonight and these feelings translated into some decent rowing strokes. I had a lot of fun tonight and was much less exhausted because I was actually rowing instead of flailing around.
At the beginning of the week I was pretty freaked out and unstable. I was ready to call it a loss on account of ataxia. However I stuck with it and found that it's just a matter of getting out there and seeing what happens. I look forward to more rowing as I try to incorporate it into my fitness routine.
Monday, April 27, 2009
Training For Next Year
After Ride Ataxia 3 (about a month and a half ago) I was sick for 2 weeks straight. At a couple points during that time, I thought it was never going to end. However after two weeks of couch time and some thrilling surfing on my way too basic cable I finally pulled out of it and now I am back to feeling 100%.
During the two ill weeks I did absolutely zero physical activity and my muscles tightened up big time. The muscles holding my knees together were so tight that it was painful to ride. I was a little concerned so I paid a visit to Dirk, my Physical Therapist, who told me that there is no reason to be alarmed, I just needed to get loosened up. So I massaged and stretched the heck out of my legs for two weeks in preparation for the Chico Wildflower ride. The ride was yesterday and there was a strong presence from the Ride Ataxia Cycling Team.
Left to Right: ED, Chris, Becky, Karen, Stephanie, Diane, Mike, Me, John. Not Pictured: Tess, Mark
There were many options for the ride. A century (100 miles), 65 miler, flat 60 miler, flat 30 miler. John was the only brave soul to complete the century (his first century), congratulations John! A few of our group modified the century route to complete about 85 miles, some of us did the flat 60 miler which turned into about 75 after we got lost, hooray! And a couple in our group completed the 30 miler, congratulations ladies!
The weather was fantastic and we all had a great time. We enjoyed a large meal and massages at the end.
Today I was very tight but it could have been much worse. I am headed back to see Dirk to make sure I continue to stay loose!
During the two ill weeks I did absolutely zero physical activity and my muscles tightened up big time. The muscles holding my knees together were so tight that it was painful to ride. I was a little concerned so I paid a visit to Dirk, my Physical Therapist, who told me that there is no reason to be alarmed, I just needed to get loosened up. So I massaged and stretched the heck out of my legs for two weeks in preparation for the Chico Wildflower ride. The ride was yesterday and there was a strong presence from the Ride Ataxia Cycling Team.
Left to Right: ED, Chris, Becky, Karen, Stephanie, Diane, Mike, Me, John. Not Pictured: Tess, MarkThere were many options for the ride. A century (100 miles), 65 miler, flat 60 miler, flat 30 miler. John was the only brave soul to complete the century (his first century), congratulations John! A few of our group modified the century route to complete about 85 miles, some of us did the flat 60 miler which turned into about 75 after we got lost, hooray! And a couple in our group completed the 30 miler, congratulations ladies!
The weather was fantastic and we all had a great time. We enjoyed a large meal and massages at the end.
Today I was very tight but it could have been much worse. I am headed back to see Dirk to make sure I continue to stay loose!
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