Here is a short clip of my presentation at the FARA Therapeutics Symposium and the Collaborative Clinical Research Network (CCRN) in FA. I'll get better at the videography, I promise...
Thursday, July 16, 2009
Wednesday, July 15, 2009
Visualization
I am speaking in the morning. I get pretty amped up when I am preparing for a speech. I plan out what I am going to say in my mind and then I imagine myself delivering the message and I imagine the audience reaction, I kinda go through the whole thing before hand so when I get in front of the audience I have already given this speech to this audience in this very situation. I guess you might call it visualization...
So I decided to prepare during a workout on the stationary recumbent bike in the fitness center here at the hotel tonight. My target heart rate zone for tonight was 135-140 bpm. So I started pedaling and I reached 135 comfortably and I was holding pretty strong. So I took my eyes off the heart rate monitor and started thinking about what I am going to say in the morning. I imagined introducing myself, thanking the researchers for all their work, telling them that we are rooting for them, telling my story from diagnosis to triumph and research funds... I finally looked down at my heart rate monitor and It said 155 bpm, I overshot my target a bit. Wow I got pretty amped while imagining myself in front of the crowd. I might even work speeches into my regular workout routine, perhaps I will wear my heart rate monitor in the morning and it can serve as a workout...
So I decided to prepare during a workout on the stationary recumbent bike in the fitness center here at the hotel tonight. My target heart rate zone for tonight was 135-140 bpm. So I started pedaling and I reached 135 comfortably and I was holding pretty strong. So I took my eyes off the heart rate monitor and started thinking about what I am going to say in the morning. I imagined introducing myself, thanking the researchers for all their work, telling them that we are rooting for them, telling my story from diagnosis to triumph and research funds... I finally looked down at my heart rate monitor and It said 155 bpm, I overshot my target a bit. Wow I got pretty amped while imagining myself in front of the crowd. I might even work speeches into my regular workout routine, perhaps I will wear my heart rate monitor in the morning and it can serve as a workout...
Tuesday, July 14, 2009
Scientists
I am spending the week in Philadelphia at a meeting of the FARA Therapeutics Symposium and the Collaborative Clinical Research Network (CCRN) in FA. Its pretty nuts hanging out with a bunch of researchers and scientists. Something truly amazing happens when you get all this brain power in the same place and concentrate it on a common goal, its like a little kid burning ants with a microscope...kinda. For example, tonight I was sitting at the dinner table with a bunch of researchers that represent different research and scientific entities around the world and they were talking about phenotypes and enzymes and mitochondria and I got lost very quickly. However, it seems they could go on for hours about this stuff. They get it and they are sharing it with each other here this week. All these ideas from all over the globe are coming together in the same place to share and learn in the quest for a cure.
A great thing for me is to realize that we (the lay people, the passionate fundraisers, the Ataxia community) are a huge part of the process, we are part of the energy that gets concentrated to create the heat that burns the ants...is this metaphor working? An illustration of this point: at dinner I was sitting next to Dr. Miriam Rai, who works in a lab in Brussels, Belgium under the direction of Dr. Massimo Pandolfo. Miriam was telling me about some compounds that she is studying. She gets these compounds (HDAC inhibitors) from Repligen corporation who is operating with money that they received from the grants that were funded through Ride Ataxia II. It was truly rewarding to see that our efforts are being put into action in the laboratory. Team Ride Ataxia and all the grassroots fundraising efforts are what is driving the research! We are a huge part of the solution!
A great thing for me is to realize that we (the lay people, the passionate fundraisers, the Ataxia community) are a huge part of the process, we are part of the energy that gets concentrated to create the heat that burns the ants...is this metaphor working? An illustration of this point: at dinner I was sitting next to Dr. Miriam Rai, who works in a lab in Brussels, Belgium under the direction of Dr. Massimo Pandolfo. Miriam was telling me about some compounds that she is studying. She gets these compounds (HDAC inhibitors) from Repligen corporation who is operating with money that they received from the grants that were funded through Ride Ataxia II. It was truly rewarding to see that our efforts are being put into action in the laboratory. Team Ride Ataxia and all the grassroots fundraising efforts are what is driving the research! We are a huge part of the solution!
Monday, July 13, 2009
Ride Ataxia Philly
Hey folks. I am super excited to announce the next event on the Ride Ataxia Calendar. Ride Ataxia has been working closely with Outback Steakhouse and FARA to put together a one day ride in Philadelphia in October. This will be the first Ride Ataxia event on the east coast! We hope that a smaller event like this will allow for more participation from those who could not commit a week or 10 of time to our previous events. This event is going to be a lot of fun with different lengths of rides to span the spectrum of abilities, great food from Outback Steakhouse, Bonefish Grill, and Carabba's Italian Grill, and fall festivities for all ages.
We will have online registration and more info available soon. For now, mark your callendar for October 25, 2009 for Ride Ataxia Philly! For more information please visit http://rideataxia.org/philly.
Wednesday, June 17, 2009
Training Program
So I am starting a new training program on Monday and tonight I went in to visit my trainer, Dirk, for a baseline Anaerobic Threshold test. This test tells us what kind of shape I am in so we can design a training program to fit my needs. Specifically this test tells us my heart rate and pedaling efficiency at different stages of exertion. Now we can design my training program to target certain heart rate zones to work in.
So we set my new trike up on a stationary trainer. This trainer was hooked up to a computer and told us my power output in watts. We also hooked up a little magnet on my crank that told us how fast I am turning the crank. The combination of these two mechanisms told us my pedaling efficiency and the distribution of power between my two legs. The last component was the heart rate monitor that was hooked up to my chest. This allowed us to set the five heart rate zones for an optimized training plan.
So all of this stuff is hooked up to me and my bike and all the data is being displayed on the screen in front of me. Also on this screen are two cyclists. One represents me and one represents the guy I am trying to keep up with. During the test, this other guy kept getting faster and faster and the resistance against my pedaling kept increasing. All the while Dirk is asking me to tell him how hard I am working on a scale of 1-20...In the end the other guy took off and I was left in the dust at a 19 effort level...I have lots of work to do.
During the first stage of the training I will work on building a strong BASE (leg and core muscles) which will allow me to train more aggressively without threat of injury. So we went over some strength building exercises to be done with the aid of an exercise ball.
The threshold test felt like a Gatorade commercial which was pretty cool and I am stoked to have some direction in my training and to be able to measure the results. Now I just gotta make it happen!
So we set my new trike up on a stationary trainer. This trainer was hooked up to a computer and told us my power output in watts. We also hooked up a little magnet on my crank that told us how fast I am turning the crank. The combination of these two mechanisms told us my pedaling efficiency and the distribution of power between my two legs. The last component was the heart rate monitor that was hooked up to my chest. This allowed us to set the five heart rate zones for an optimized training plan.
So all of this stuff is hooked up to me and my bike and all the data is being displayed on the screen in front of me. Also on this screen are two cyclists. One represents me and one represents the guy I am trying to keep up with. During the test, this other guy kept getting faster and faster and the resistance against my pedaling kept increasing. All the while Dirk is asking me to tell him how hard I am working on a scale of 1-20...In the end the other guy took off and I was left in the dust at a 19 effort level...I have lots of work to do.
During the first stage of the training I will work on building a strong BASE (leg and core muscles) which will allow me to train more aggressively without threat of injury. So we went over some strength building exercises to be done with the aid of an exercise ball.
The threshold test felt like a Gatorade commercial which was pretty cool and I am stoked to have some direction in my training and to be able to measure the results. Now I just gotta make it happen!
Saturday, June 6, 2009
New Trike!
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.
Also, my friend Dynah was funded by CAF this year too, check her new trike out here.
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.
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