tag:blogger.com,1999:blog-312871332024-03-13T18:04:24.216-07:00rideATAXIArideATAXIA is a program of the Friedreich's Ataxia Research Alliance.
Bike ride fundraiser for Friedreich's ataxia (FA) research. Dallas, NorCal, Chicago, Philly, Orlando. Presented by Outback Steakhouse.kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.comBlogger218125tag:blogger.com,1999:blog-31287133.post-13038597904124848362014-12-09T15:06:00.000-08:002014-12-09T15:32:13.302-08:00A Guide to Beginning Your Search For Adaptive Cycling Equipment<span style="font-size: x-small;">**Note: This article is focused on individuals affected by FA but aspects of this article may relate to many other conditions with symptoms that include compromised balance and coordination.**</span><br />
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It is likely that every person with Friedreich's ataxia (FA), Ataxia, or any neuromuscular disease with no current treatment or cure has heard it many times before "Exercise is the key to staying healthy and may even slow down the progression of the disease."<br />
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With obvious positive physical and mental effects, exercise is the main treatment that is available to us right now. However there are many factors such as accessibility, availability, and cost that limit exercise.
Adaptive cycling is one of the most accessible forms of exercise because anyone can do it as long as they have the right equipment.
For someone living with Friedreich's ataxia (FA) who would like to try adaptive cycling, the first question is:<br />
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Would it be better to use a trike:
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Or a handcycle:
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For someone with FA, exercising the legs is ideal when walking and running become more difficult, and for that the trike is the way to go. However, many FA patients have difficulty coordinating the movement of their legs to be able to effectively power a trike, especially if the person is in a wheelchair part or full time. It is commonly called "knee flop" or "leg flop" when the knees flop out of alignment with the ankles and hips during a pedal stroke. This can be a painful problem for someone trying to ride even a short distance as their legs flop to the side and hit the tires or handles or flop in and knock together with every pedal stroke. In this case it would be ideal to try a handcycle.<br />
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<b>Handcycles</b><br />
There are many types of handcycles with different sitting positions and price ranges. Handcyles are not available at your local bike shop, and there is no good way to know which one is best for you unless you test ride a few models. You really need to check out your closest adaptive sports program who will likely have a few different models in their fleet and will have staff with the experience needed to provide a good test ride. To find your local adaptive sports program (depending on where you live, you may have to drive several hours to get there), first check out <a href="http://disabledsportsusa.org/" target="_blank">disabledsportsusa.org</a> and click on "Chapters" in the top menu. There, you will find a map where you can search for the program closest to you and you can get contact info to reach out and set up an appointment. If there is not a program on the map close to you, Google "adaptive sports [your city]" or "disabled sports [your city]" and see what comes up. You may find a program that is not on the map. Contact the program and set up a test-ride. Many of these programs are 100% volunteer so be patient, polite, and persistent.<br />
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<b>Trikes</b><br />
Again, there are many different trikes out there so it is important to do your research and take the all important test-ride before you make any decisions. For the purposes of this article, I am going to focus mainly on one manufacturer of recumbent trikes. Catrike makes an incredibly comfortable, durable, and fast trike with brilliant engineering and skilled manufacturing. They are made in the USA and all of their R&D takes place in-house but they can ship anywhere in the world. They have a worldwide network of dealers to help get their trikes in the hands of those who want to ride. Catrike is also committed to FARA's mission - to treat and cure FA. They participate in rideATAXIA Orlando each year, and their dealers are involved with all the other rideATAXIA locations. They promote awareness at their annual rally, and they spread the word on a regular basis to their community of enthusiasts and passionate dealers. Catrike also contributes generously to the Ataxian Athlete Initiative - a program that provides adaptive cycling equipment to people living with Ataxia.<br />
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Here is a step by step guide about shopping for a Catrike (aspects of this process apply to trikes in general):<br />
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<li>Check out <a href="http://catrike.com/">Catrike.com</a> and take a look at all the trikes they have to offer. I would recommend the Trail or Villager if you have never been on a trike before. However, before any decisions are made you need to go for a test ride. </li>
<li>Click on "Find Dealer" in the top menu bar. Find the dealer closest to you. Sometimes the closest dealer may be several hours away. On the Catrike website they rank the stores mainly based on how many different models they have in stock. I would stick with Gold, Concept, or Megastore if you are looking to set up a test ride because those are the shops that are most likely to have what you are looking for in stock. </li>
<li>Let me (Kyle Bryant - kyle@rideataxia.org) know which dealer you have in mind. I will let Catrike know so they can make contact with the dealer to let them know you're coming.</li>
<li>After getting the go-ahead from me, call the dealer. Tell them that you are looking into purchasing a Catrike and ask them for advice about what model(s) to consider. They will likely ask you questions about how much cycling experience you have, what kind of roads you will be riding on, how fast you think you want to ride, what your long term cycling/fitness goals are etc. (Regardless of whether they ask you, these are questions you should ask yourself in the process.) Ask if they have their recommended model(s) in stock in addition to the model(s) that you are interested in from looking at the website. </li>
<li>Many people with FA, Ataxia, or any neuromuscular disease that affects balance and coordination has trouble keeping their feet on the pedals. Therefore it is recommended to use “clipless pedals” with cycling shoes whenever you ride.<div class="separator" style="clear: both; text-align: center;">
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<br />Make sure to have this conversation with the dealer before you get there so you can make arrangements for the test ride. You will have a much different experience on your first ride if you can’t keep your feet on the pedals. If shoes and pedals is not an option, many people use bungee cords or Velcro straps to keep their feet on.<br /><br /><div style="text-align: left;">
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Whatever you do, consider this factor so you can avoid disappointment when you take your first ride.</div>
</li>
<li>Schedule a test ride. It might not make sense to go tomorrow so plan ahead and bring a friend. Make a field trip of it! </li>
<li>Go for a ride! Test a few models. Consider all the factors and have fun choosing your new machine.</li>
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Catrike makes an incredible machine and is very generous to the FA community but the bottom line is we want you moving and enjoying the wind in your face no matter which brand of trike you choose. In some cases you may have to consider a different brand. For example: Catrike makes a model called the Pocket, designed for smaller riders. However the smallest recommended size for the Pocket is 4'10" so for kids who are smaller than that, we recommend looking at <a href="http://www.kmxus.com/k3.html" target="_blank">KMX</a>. There are many factors to consider so if you have any questions email me at kyle@rideataxia.org, if I cannot answer your question, I will find someone who can.<br />
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<b>Cost</b></div>
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Handcycles and trikes are not cheap and often times cost prohibitive for people living with disability. However there are many programs out there that provide funding for adaptive sports equipment. </div>
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<ul>
<li>The Ataxian Athlete Initiative (AAI) provides funding for adaptive cycling equipment for people living with Ataxia, through a competitive grant application process. This program is mainly focused on introducing beginners to the world of adaptive cycling but has also funded a few more experienced athletes. The program has funded 21 people since 2009. The application includes general information, a detailed equipment request, your story, and letters of reference applications are open once a year. Check <a href="http://rideataxia.org/aai">rideataxia.org/aai</a> for more info and the application when it opens.</li>
<li>The Challenged Athlete's Foundation has a program called <i>Access For Athletes</i> providing funding for adaptive sports equipment. This program historically has been aimed at taking an athlete to the next level in competition but they have also funded many first time athletes including several in the FA community. During 2014, the program distributed a total of over $3 Million in Adaptive sports funding to 1,469 people. The application is open annually in the late fall. More info: <a href="http://www.challengedathletes.org/site/c.4nJHJQPqEiKUE/b.6449453/k.E830/Access_for_Athletes.htm" target="_blank">CAF Access For Athletes</a>. </li>
<li>There are also regional grant programs that you will need to search for. For example, if I Google "adaptive sports equipment grants Pennsylvania" one of the results is for the Equipment Grant Program at the IM Able Foundation: <a href="http://imablefoundation.org/equipment-grants/">imablefoundation.org/equipment-grants/</a>. The IM Able Foundation mainly serves Pennsylvania and surrounding states, but there are organizations like this in almost every region. Take a look in your area, check out the inclusion criteria and make contact with the organization to make sure it is a good fit and get some tips on the best practices for submission.</li>
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There is a lot to it but if you keep at it you will be rewarded with the gift of sport which will bring increased physical, mental, and emotional satisfaction back into your life.</div>
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kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com7tag:blogger.com,1999:blog-31287133.post-41823136408765338102014-10-10T15:01:00.000-07:002014-10-10T15:05:05.589-07:00Ride Ataxia Philly Promo VideosWe are incredibly grateful to our Media Partner, <a href="http://phl17.com/">PHL 17</a> for an outstanding job on three promo videos leading up to the Philly ride. Check them out. Thank you Jennifer Lewis-Hall and team!
<script height="225px" width="400px" src="http://player.ooyala.com/iframe.js#ec=Zwd2J3cDqK-QvLy_P0haWWGdtsEkl4kz&pbid=b2b86e82aa149f09cf286ff01a8a3dc"></script>
<script height="225px" width="400px" src="http://player.ooyala.com/iframe.js#pbid=b2b86e82aa149f09cf286ff01a8a3dc&ec=c1Z2x5cDrJNWkYEzSBlxkITNbnLFeVqP"></script>
<script height="225px" width="400px" src="http://player.ooyala.com/iframe.js#pbid=b2b86e82aa149f09cf286ff01a8a3dc&ec=Y2aGkwcTowFcoRCq5pVOA_nSziG-PD5U"></script>kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com0tag:blogger.com,1999:blog-31287133.post-27324161501907908962014-10-04T08:59:00.001-07:002014-10-04T08:59:21.865-07:00Ride Ataxia funded research. MRI biomarker study at UMNEach year FARA puts out a request for proposal for research to be funded by funds from Ride Ataxia. This research grant is focused on translational research - research that will help bridge the gap between the laboratory and the clinic. Last year the Ride Ataxia named award went to a team at the University of Minnesota who is analyzing the anatomical and functional connectivity of the central nervous system in FA using Magnetic Resonance Imaging (MRI). This work is critical to understanding when and which neurological pathways are compromised in FA and will be a building block for future therapies. The Bob Allison Ataxia Research Center (BAARC) also contributed to the funding of this initial grant.<br />
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In July 2013, I took a trip up to Minneapolis to meet the research team and contribute to the project by offering images of my spinal cord. The first scan was on Monday and I arrived CMRR (Center for Magnetic Resonance Research) mid-morning for my baseline exam which included the usual touching finger to nose, tuning fork to toe, and peg board test among others. That's when I had my first in-person contact with the team at UMN. I had been working with Diane Hutter for months planning my travel, accommodations, and schedule for my visit. Diane put me through the paces of the FARS (Friedreich's Ataxia Rating Scale) and put me at ease as we prepared for 5 hours in 2 days in the "the magnet". Diane, thank you for your hospitality and friendship.<br />
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Then I prepared to get inside the magnet for the first time. The CMRR has quite a few magnets. Most MRI machines at hospitals are 1.5 T (representing the power of the magnet and the resolution of the images that can be produced). This study uses 3 T and 7 T magnets. The CMRR has a 9.4 T magnets and they are building a 10.5 T magnet which will be the strongest in the world. It was clear to me that this was the place to be for an MRI study. <br />
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When you go into the room with the magnet there are signs everywhere that say "NO METAL IN THIS ROOM" so the preparation includes changing into scrubs and leaving everything in the locker in the prep room. They even ask if you have any tattoos because there is iron in the red and orange colors that could be a problem in the magnet, it's crazy strong! I layed down on the table and the team covered me in all kinds of equipment to collect data from the machine and then covered all of that with a blanket because they keep it nice and cool in that room. <br />
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The first scan took an image of my spinal cord from my brain all the way down to my lower back. It is a composite image of a bunch of different images of different sections of my spine so the bed was moving back and forth as I laid on my back with the tube about 6 inches from my nose while the machine made all sorts of loud buzzing and hammering noises (I had earplugs in and music playing through headphones and I could talk to Dr. Jim Joers [the man at the controls] whenever I wanted. Plus I had this little squeeze ball in my hand that I could squeeze to let the team know if I was getting uncomfortable).<br />
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This image is not the final product. After the image is captured, Dr. Christophe Lenglet takes over and applies two masters degrees in Computer Science and Engineering, and Applied Mathematics as well as a PHD in Biomedical Imaging & Neuroscience plus a few years experience as a research scientist for Siemens (the company that makes the MRI machines) to create a 3D rendering of the spinal cord so they can better understand the structural and functional alterations of brain connections in FA.<br />
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Dr. Lenglet's TEDx Talk:<br />
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These images are not the only thing that comes out of this
study.<span style="mso-spacerun: yes;"> </span>A super specialized technique
called Spectroscopy looks at a very specific part of the spinal cord and
measures the concentration of certain chemicals in that particular spot.<span style="mso-spacerun: yes;"> </span>This study takes a look at people with FA and
compares their MRI’s to age matched controls who do not have FA.<span style="mso-spacerun: yes;"> </span>The difference in the concentration of these
certain chemicals between people who have FA and people who do not have FA will
help tell the story of the effects of the disease.<span style="mso-spacerun: yes;"> </span>These differences will hopefully let the
researchers measure very accurately, the progression of the disease and will help
us determine if a drug is working when this technique is used in a clinical
trial because it will help tell if the drug has altered the course of FA.<o:p></o:p></div>
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The area that the researchers target for spectroscopy in the spinal cord is a very small section (6mm x 8mm x 30mm) so the scan is very sensitive to movement.<span style="mso-spacerun: yes;"> </span>I kept falling asleep during the spectroscopy
portion of the scan – and when I fall asleep, I twitch, which was not helping
the data collection process.<span style="mso-spacerun: yes;"> </span>I can hear
Dr. Joers in the little ear plugs, and he can hear me talk back, so he very
politely told me that the movements were not great for the data and then I
stayed awake for the final 20 minutes.<span style="mso-spacerun: yes;"> </span>I
am going to pick a different Pandora station next time, Jack Johnson was
putting me to sleep.<span style="mso-spacerun: yes;"> </span>Perhaps I need to
go with some punk rock from my highschool/college years.<br />
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In the end Dr. Jim Joers and Dr. Pierre-Gilles Henry said
they got the data they needed and it looked good.<span style="mso-spacerun: yes;"> </span>After the data is collected, Dr. Henry
applies his expertise to analyze the spectroscopy data.<br />
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Dr Henry has two Masters degrees: one in Electrical Engineering from SUPELEC in Paris, France, and one in Neuroscience from University of Paris 6. He got his PhD in Neuroscience from the University of Paris 6 in 2000 and then came to the CMRR in Minneapolis.
From 2001 to 2010, he did fundamental research on developing new methods to study brain metabolism using MR spectroscopy (MRS).<br />
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From Dr Henry: "MRS is really a unique technique that allow us to study the neurochemistry and metabolism of the nervous system non-invasively.<br />
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In 2010, after a major life change (cochlear implant surgeries), I decided I wanted my research to have a more direct impact on the life of patients. I am now focusing my efforts on two diseases: Huntington's Disease and Friedreich's Ataxia. The main goal, as you know, is to find good biomarkers for clinical trials."<br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302948px; line-height: 20px; text-align: left;">Top left: Dr. </span><span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302948px; line-height: 20px; text-align: left;">Jim Joers. Top right: Dr. Pierre-Gilles Henry. Bottom left: Dr. Christophe Lenglet. Not pictured: Diane Hutter.</span></td></tr>
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With the data that they collected and analyzed over the past year, the team was able to prove that there is measurable damage to the nervous system in people with FA and they were able to get another round of funding from FARA, GoFar, and Ataxia UK to scan more patients in hopes of finding out how damage to the nervous system changes over time. <br />
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Another aim of this study is to figure out what the timeline looks like for damage to the nervous system and how severe the damage is when correlated with the neurological symptoms (balance and coordination) of the disease. They still need subjects who are in early stages of the disease and pre-symptomatic patients who would like to accelerate research with their participation.<br />
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I am always excited to participate in research that will get us closer to a treatment and a cure for FA. Ride Ataxia provides an opportunity to contribute to the research that will get us there. <br />
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See you on the road!<br />
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<br />kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com1tag:blogger.com,1999:blog-31287133.post-64273536077511978162014-06-04T10:05:00.002-07:002014-06-04T10:24:52.889-07:002014 Ataxian Athlete Initiative Recipients<div class="separator" style="clear: both; text-align: center;">
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The Friedreich’s Ataxia Research Alliance (FARA), in partnership with <a href="http://thefaproject.org/" target="_blank">The FA Project</a>, <a href="http://catrike.com/" target="_blank">Catrike</a>, <a href="http://meltingpot.com/" target="_blank">The Melting Pot</a>, and <a href="http://www.texasirishcycling.com/Donation" target="_blank">The Texas Irish Foundation</a> is pleased to announce the 2014 Ataxian Athlete Initiative (AAI) grant recipients: Liam Dougherty of Philadelphia, PA, Carl Estabrook of Rockport, MA, Abby Yingling and Chase Yingling of Lemoyne, PA, Amanda Hernandez of Graham, TX, and Mary Fuchs of Sun Lakes, AZ.<br />
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The AAI provides adaptive cycling equipment to people with Ataxia who have demonstrated the desire to stay active and healthy despite their disabilities. Friedreich’s ataxia (FA) is a rare, progressive and life-shortening neuromuscular disease for which there is currently no treatment or cure.<br />
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The cost of a piece of adaptive cycling equipment (recumbent trike or handcycle) is $2,000 - $5,000 which makes the sport cost prohibitive for many people living with Ataxia. The AAI provides funding to create an opportunity to improve an individual's confidence and self esteem through recreation and physical fitness.<br />
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Read about the impact of adaptive equipment from this year's grant recipients:
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Liam</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLOqVOvdLppDjVKeAG5FkvtHpQfckUgwjCw2LLnC79IMB2KGqoqFsvEV-VWNwUuaIhpf5H3jjT_QI5h61xrFZc5Rt-8EaD9L9rEai4SIZk4xmcNb3CEN9D2_VJtEvz_8l5e474/s1600/222184_10150175193887057_1462056_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLOqVOvdLppDjVKeAG5FkvtHpQfckUgwjCw2LLnC79IMB2KGqoqFsvEV-VWNwUuaIhpf5H3jjT_QI5h61xrFZc5Rt-8EaD9L9rEai4SIZk4xmcNb3CEN9D2_VJtEvz_8l5e474/s1600/222184_10150175193887057_1462056_n.jpg" height="320" width="240" /></a></div>
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“I have discovered how much control I have over my own life. My future is not out of my hands. I am able to control myself in ways that are more important than coordination and fine motor movements. I am in control of what I learn, what I do, and the kind of person I will continue to grow into. Before anything else, FA has taught me to focus on the essential parts of who I am, and look at my future through that lens. Reevaluating personal priorities has shown me that it is crucial that I persevere despite the friction I sometimes feel from my disorder.</div>
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A Catrike model would be safer for me to commute on, and it would allow me to go further as I continue participating in the annual Ride Ataxia bike rides.”</div>
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Carl</div>
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"I started recumbent bike riding. It was a revelation! The wind in my face and the ability to move faster than a shuffle….incredible! I feel it’s what got me through a very difficult time. </div>
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I went to my first "ride Philly" this year and raised over $1000. It was amazing! I plan on attending every year.</div>
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I am requesting the catrike 700. I grew up being very athletic and know what it feels like to go fast and Id like to feel that again."</div>
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Abby</div>
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"I had the opportunity to go to a recumbent bike store to test ride several trikes. I haven’t been comfortable enough to ride my bicycle in years, but as soon as I got on the Catrike I felt at ease! As I started pedaling, it just felt amazing. When I’m walking I am always worried about falling over and looking for something to lean on, but when riding I felt like I could go for miles. </div>
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I am hoping that with this trike I will be able to ride in the Ride Ataxia Philly this year with my friends and family. I am determined to ride my new trike not only for myself, but to help raise money to help others and cure FA!"</div>
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Chase</div>
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"'I feel so alive!' and, 'I could do this all day!' is what I said to my parents on the day I went to State College and got to test ride a trike. What a feeling to finally ride around the parking lot with my sister and brother! I quickly began to think of all the places I could ride with my family and friends. Around my neighborhood, to my friend`s house, and along the Susquehanna River are all places I would explore on my trike. But the most exciting and rewarding rides I will take will be in the Ride Ataxia with my family and friends to raise money to find a cure for FA."</div>
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Amanda</div>
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"A friend has been letting me borrow her recumbent trike. I love it! I like the freedom it gives me. But I know I will eventually have to give it up."<br />
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Mary</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHeePdzZO8nauE5Qm9Oop4IJ290n9G5Zv371JCJUqZ00xdghv8CarjA2t3n7IHsT7nzbIv7UAHmqJCnjvlaWeRNbw1wKH6LGwkp-1p2GqvE6LlS-XStXPMyTlRWuxZwcGBekVC/s1600/10268605_10104034637001969_2209885424744355231_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHeePdzZO8nauE5Qm9Oop4IJ290n9G5Zv371JCJUqZ00xdghv8CarjA2t3n7IHsT7nzbIv7UAHmqJCnjvlaWeRNbw1wKH6LGwkp-1p2GqvE6LlS-XStXPMyTlRWuxZwcGBekVC/s1600/10268605_10104034637001969_2209885424744355231_n.jpg" height="320" width="240" /></a></div>
"Arizona has been good for me, sunny, weather great to be in our adaptive pool and be active on a daily basis. I want this trike for exercise, independence, freedom, and of course for awareness!<br />
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It is all about diet, exercise, attitude, and Ataxia Awareness."<br />
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The AAI is managed by Ride Ataxia – a FARA program. AAI grants are administered through a competitive application process. Applicants were invited to submit a short summary of their experience with Ataxia and their efforts to stay active. Individuals then selected the most appropriate adaptive cycling equipment to suit their abilities and described how such equipment would help them to reach their fitness goals and improve their quality of life.<br />
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With the 2014 grant awards, the AAI has provided equipment for 27 individuals since its 2009 inception. Additionally, Ride Ataxia teamed up with the Texas Irish Foundation specifically to provide equipment in the North Texas area.kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com0tag:blogger.com,1999:blog-31287133.post-49831749002680976342014-05-15T08:06:00.002-07:002014-05-15T08:06:55.425-07:00The Rupeleton Rides Strong Again<div style="text-align: center;">
<i>“The rides make me feel like we’re part of an incredible team and that we can really make a difference and find a treatment and eventually a cure for FA”</i></div>
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Santa Clara, CA – Determined as ever to forge ahead as a “normal” family, the Rupel family is faced with unique challenges that most families have never even heard of. Bart (age 50) and Brenda (51) have a son, Matt (23) with a rare, neuromuscular, genetic condition called Friedreich’s ataxia (FA). Their daughter Katie (20) is also carrier of the gene.<br />
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Matt was diagnosed 10 years ago, when he was just in 8th grade. While other middle-school kids were worrying about fitting in, Matt and his family were beginning an epic battle.<br />
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Friedreich’s ataxia (FA) is a genetic, progressive and life-shortening neuromuscular condition, and there is currently no treatment or cure. Symptoms start out as difficulty with balance and coordination, and in a short period of time it progresses into life-altering loss of mobility, energy, speech and hearing. FA also presents serious risk of scoliosis, diabetes and cardiac disease.<br />
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At the moment, Matt is in an El Paso, TX hospital. He became ill while visiting family. His mother, Brenda, is with him and is hopeful this will just be a speed bump in the race for a cure.<br />
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The Rupel family is preparing for a very special event, called Ride Ataxia NorCal, a cycling fundraiser to support the Friedreich’s Ataxia Research Alliance’s (FARA) mission of finding a cure for FA. <br />
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Ride Ataxia is taking place on May 31, 2014 and will offer 5, 17, 40 and 60 mile routes for all abilities on scenic country roads, starting at the Veterans Memorial Center: 203 East 14th Street Davis, CA 95616. For more information about the ride, visit: <a href="http://rideataxia.org/norcal">rideataxia.org/norcal</a>.<br />
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“I participate in Ride Ataxia for several reasons,” says father, Bart Rupel. “I decided to join Kyle Bryant, the founder of Ride Ataxia, on his second ride [from Sacramento] to Las Vegas. The camaraderie was incredible and I found out that I could ride my bike 50 miles and go up 5,000 feet and live to do it again the next day. The physical challenge was brutal for me, and yet here was Kyle and Sean both with FA doing it.”<br />
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“The next year I helped plan the Portland to Seattle ride with 4 days of rain, hail and wind. I loved it. And I loved that my son, Matt, was able to do most of that ride on his trike and that his two best friends, John and Ryan, were able to ride with us. The rides make me feel like we’re part of an incredible team and that we can really make a difference and find a treatment and eventually a cure for FA,” continues Bart.<br />
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Matt has a custom-made trike, a piece of adaptive cycling equipment, that allows him to stay mobile, active and moving. For individuals with FA, being able to move with fluidity and speed through cycling is freeing, enabling and inspiring.<br />
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Ride Ataxia NorCal aims to raise $125 thousand dollars for research. “What is unique about FARA is the collaboration between the researchers and the families,” says Bart.“The families raise the funds and the researchers are finding the treatments. The researchers get to know the families and are highly driven to find a treatment, seemingly more so than if it were just professional pride.”<br />
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Advice from Bart: “Stay involved. As Kyle says, keep turning the crank. Keep up the fundraising, it will lead to a treatment. It’s what we can do to stop this disease.”
kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com1tag:blogger.com,1999:blog-31287133.post-27777127336522085132014-05-06T08:51:00.000-07:002014-05-06T09:45:39.373-07:00NorCal 2014 dedicated to Lee MitchellSometimes it takes someone who has traveled the road before you to show you the way.<br />
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In early 2009 I had a dream to do Race Across AMerica (RAAM) - a 3,000 mile nonstop bike race with over 100,000 feet of climbing. For the race I recruited a team of 3 friends, one of whom also has Friedreich's ataxia (FA) - the energy deprivation disease that is supposed to keep us from accomplishing things like this. It was a monumental task and I knew I would need lots of help. So I put out the call and got an overwhelming response from friends and family. However none of us knew about ultra cycling much less how to survive "The World's Toughest Bike Race."<br />
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I had incredible support from many, many, familiar people but it was a stranger who was the key to our success. We met Lee Mitchell at an informational seminar for RAAM riders and crew where we learned everything from proper nutrition, to crew schedules, to all of the rules to keep us safe. The seminar only served to add to the overwhelming stress of the logistics of RAAM. At the seminar I sat next to a skinny guy with a big white beard and red socks. I had no idea who he was but when he spoke, everyone listened. This guy had been a crew chief on RAAM for over 20 years and could tell a story about any "what if?" that anyone could think of. I am pretty sure he sensed my mounting stress throughout the seminar so he offered his phone number and he said he would send me his info pack.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR5Y9gcEdGTV4sEPJEZW-MlbThZOvaCcZVt4WjPynPG3qJWh043VSHUv00Z69-2MQqtdrztP3gN7Djxgc60CzgYkHTIvtXExQcqf7MgdxUNjfiqJt13X7TIdOYNjlJcd4uVLKi/s1600/Lee+Mitchell.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR5Y9gcEdGTV4sEPJEZW-MlbThZOvaCcZVt4WjPynPG3qJWh043VSHUv00Z69-2MQqtdrztP3gN7Djxgc60CzgYkHTIvtXExQcqf7MgdxUNjfiqJt13X7TIdOYNjlJcd4uVLKi/s1600/Lee+Mitchell.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lee 'Fuzzy' Mitchell</td></tr>
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Over the next few months I had many conversations with Lee Mitchell whenever I needed something. He walked us through the process and showed us the ropes. He even invited us out to his house to practice rider exchanges in the parking lot across the street. Lee guided us through everything and asked for nothing in return. Lee lived to help others accomplish their cycling goals; it was sufficient payment when we successfully crossed the finish line - proving to ourselves and the world that we are capable of anything. <br />
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Cycling accomplishments are much more than miles under the belt and increased fitness. It is all about the feeling you get when you think to yourself "If I can do that, I can do anything." Lee knew this and so he dedicated his life to helping others accomplish the impossible. He spent almost every weekend in the summer for over 20 years volunteering at Ultra Cycling Events - double centuries, and 500 mile races lending his time and experience to help others reach the next level in cycling, proving that they can do anything. There are countless people who can say that the only reason they finished was because Lee provided a spare tube, tire, spoke, seat, crankset, or encouraging word. I am one of those. There is no doubt in my mind that Team FARA would have never even made it to the start, much less the finish of RAAM if it were not for Lee Mitchell.<br />
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After Team FARA completed RAAM, Lee continued to stay fired up about FARA and Ride Ataxia. He was our SAG chief for Ride Ataxia NorCal in 2011, providing guidance to a group of rookies and ushering the very last rider in behind the wheel of his famous Bike Van. He helped us plan routes, mark the course and ensure the safety of our riders.<br />
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Any thank you will fall short of what we owe Lee for showing us that we can accomplish anything. However we are going to give it our best. This year, <a href="http://rideataxia.org/norcal" target="_blank">Ride Ataxia NorCal</a> is dedicated to Lee Mitchell.<br />
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On the inside collar of every jersey there will be a tribute to Lee:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5UT8tU9AjrVVDjYyHCJkpf6DnYHNbIO6mDoOLp0Vg7uRami9uom4aJ_kPtfG7a32iBJABLl7yULCahK1IcyUKan_LC5y2FDtCOS14yvGOtupatXr71nEqhHeZpsZDn01Y3Kul/s1600/Screen+shot+Lee+Collar.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5UT8tU9AjrVVDjYyHCJkpf6DnYHNbIO6mDoOLp0Vg7uRami9uom4aJ_kPtfG7a32iBJABLl7yULCahK1IcyUKan_LC5y2FDtCOS14yvGOtupatXr71nEqhHeZpsZDn01Y3Kul/s1600/Screen+shot+Lee+Collar.png" height="83" width="320" /></a></div>
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and on the back of every jersey will be the famous BIKE VAN license plate:<br />
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Thank you Lee. Because of you anything is possible. <br />
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You Betcha!<br />
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<br />kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com1tag:blogger.com,1999:blog-31287133.post-43051958498594639802014-04-21T13:06:00.000-07:002014-04-21T13:11:36.281-07:00Maximizing Our Impact - Ride Ataxia Relocation; Portland to SeattleIn the past two years our Northwest location, Ride Ataxia Portland, has been very successful with strong participation and fundraising - over $115,000 raised for Friedreich's ataxia (FA) research! Portland has also shown us huge support from partners such as University of Portland, Oregon Disability Sports, Incight, and Sauvie Island Academy.<br />
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We are constantly seeking opportunities to grow the ride and raise more awareness and research funds. During the past year we have come upon the opportunity for potential ride growth by moving the Northwest location to Seattle. It was a challenging decision to move the ride--- one that we wrestled with for over a year. We will hold Ride Ataxia Seattle on August 3, 2014 in an effort to grow in ridership, fundraisers and sponsors. <br />
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Registration for Ride Ataxia Seattle is now open and we invite you to check it out at <a href="http://rideataxia.org/seattle">rideataxia.org/seattle</a>, register, and come ride with us as we continue the push toward a treatment and cure for Friedreich's ataxia (FA).
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Ride Ataxia Seattle will take place at the beautiful and spacious Marymoor Park in Redmond, WA.<br />
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The ride will feature 4 different routes to span the spectrum of abilities:<br />
<ul>
<li>5 mile route - Beginner. Flat. Samammish River Trail. Map: <a href="http://ridewithgps.com/routes/4047684">http://ridewithgps.com/routes/4047684</a> </li>
<li>10 mile route: Beginner. Flat. Samammish River Trail. Map: <a href="http://ridewithgps.com/routes/4047674">http://ridewithgps.com/routes/4047674</a> </li>
<li>22 mile route: Intermediate. Some Climbing. Varried Traffic Conditions. Map: <a href="http://ridewithgps.com/routes/4047624">http://ridewithgps.com/routes/4047624</a> </li>
<li>53 mile route: Experienced cyclists only. Significant Climbing. Varied Traffic Conditions. Map: <a href="http://ridewithgps.com/routes/4047641">http://ridewithgps.com/routes/4047641</a></li>
</ul>
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All routes will feature beautiful Northwest views, fully stocked rest stops and strong SAG support.</div>
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The post-ride festivities will feature delicious food from Outback Steakhouse, and drinks from Coca-Cola, Samuel Adams, and Chateau Ste Michelle.</div>
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You can find all the details at <a href="http://rideataxia.org/seattle">rideataxia.org/seattle</a>. See you there!</div>
kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com0tag:blogger.com,1999:blog-31287133.post-91647539198230751842014-01-14T14:19:00.001-08:002014-01-14T14:26:25.613-08:00Ride Ataxia 2013 Reflection<i>This article is from The Advocate newsletter. Read the entire newsletter here: </i> <a href="http://curefa.org/_pdf/FARAnewsletterDec2013.pdf">http://curefa.org/_pdf/FARAnewsletterDec2013.pdf</a><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><b>Young Family’s
Involvement Is
A Team Effort</b></span><br />
<br />
At Ride Ataxia Chicago 2013, the Young family recruited the
largest team in Ride Ataxia history. Team Emily consisted of 76
riders from their central Illinois hometown of Gibson City, which
has a population of about 3,400. “We have been here our whole
lives and have made some amazing friends so we are able to bring
together a lot of people for the ride,” says Emily’s mom, Becky
Young.<br />
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<br />
The strong community support goes beyond the impressive team
numbers. “It is important for Emily to know that she has support.
We have not been going through this on our own.
When you are first diagnosed you go through that period of
shock and disbelief. Then it has time to absorb and it just makes
you realize how important today is — we try to live for today. After
we let it sink in we decided we want to be proactive and that’s
what led us to FARA.”<br />
<br />
The Young family has been involved in a huge way. They have
had two “Barnraisers” (a fundraiser party in their barn), a Team
FARA for the Philadelphia Half Marathon and the Chicago Half
Marathon, and the largest team in Ride Ataxia Chicago for the
past two years.<br />
<br />
“Since we have become involved we discovered a great community
of doctors and scientists who care about a treatment just as much
as we do,” Becky adds. “They are in this with us and that goes a long
way when you’re sitting up late at night thinking.”<br />
<br />
Along with participation and fundraising, the Young family takes a
huge role in planning and execution of the ride: scouting the route,
communicating with the venue and police support, passing out flyers,
handling web posting, and outreach to local media.<br />
<br />
Being involved in the ride is great for the Young family, says
Becky. “It’s a good opportunity for Emily to set and achieve goals,”
she says. Emily rode her furthest to date with a 12-mile ride on
her new Catrike. Fundraising also helps the Youngs know that
they are part of the solution — they are pushing the treatment
and cure closer and closer to the finish line. The Youngs’ community
is a huge part of that solution. “We have had so many friends
get involved and touched by the spirit of FARA,” says Becky.<br />
<br />
Families like the Youngs have assembled in six Ride Ataxia locations
across the country to ride and raise awareness and funds
for FA research. And in 2013 they reached some new milestones:<br />
<br />
<ul>
<li>More people with ataxia cycled on adaptive equipment than
ever before in the ride program </li>
<li>We reached a new fundraising record of more than $220,000
for a single ride in Philadelphia </li>
<li>In 2013, the Ride Program raised over $660,000 (gross)! </li>
</ul>
<br />
None of this would be possible without the tireless efforts of our
FA families, presenting sponsor Outback Steakhouse, and the
hundreds of volunteers. We hope you can join us for a Ride Ataxia
event near you in 2014 — Ride to Cure FA!<br />
<br />
For more information, visit <a href="http://rideataxia.org/">rideataxia.org</a>kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com0tag:blogger.com,1999:blog-31287133.post-42855284272664838452013-10-09T09:54:00.002-07:002013-10-09T14:21:07.456-07:00Ride Ataxia Remembers Garrett TimbieRide Ataxia's success is rooted in many families coming together as one team to ride and raise funds for FA research. At the heart of each family is someone who rallies the family members to action. The family volunteers to scout ride routes; they train for long distances; they fundraise and they get up before dawn to staff the first rest stop. They enthusiastically participate to do their part in changing the research landscape for Friedreich's ataxia. One such family is the Timbie Family, and they do it out of love for their son, brother, nephew, cousin, and friend- Garrett.<br />
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Garrett had an independent, positive spirit and always wore an infectious and warm smile. He was an avid sports fan and loved the Philadelphia Phillies. He traveled away to college and always took really good care of himself- working out and staying fit. Garrett was also very active in FA clinical research. Dr. Dave Lynch says: "I remember him being in every study he was eligible for, and always the first to ask about new studies. He was very good natured and laughed at almost all of my jokes." FARA's Executive Director, Jen Farmer adds: "He believed we were going to be successful in getting treatments and he wanted to be an active part of that - he was always participating in research studies and willing to try new treatment approaches."<br />
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Since the first ride in 2009, Garrett and his family have been strong supporters of Ride Ataxia Philadelphia. Ride Ataxia meant a lot to Garrett because he knew that it was an important part of the cure for FA.
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<tr><td style="text-align: center;"><a href="https://scontent-b-iad.xx.fbcdn.net/hphotos-frc1/602402_540467975979926_1641012790_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://scontent-b-iad.xx.fbcdn.net/hphotos-frc1/602402_540467975979926_1641012790_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Team Timbie at Ride Ataxia Philadelphia 2012</td></tr>
</tbody></table>
In celebration of his determined spirit and commitment to FA research, we dedicate Ride Ataxia Philadelphia 2013 to Garrett Timbie. Every Ride Ataxia Philadelphia jersey will have a remembrance of Garrett on the inside collar:
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Thank you Garrett and Team Timbie for your steadfast support of Ride Ataxia and FA research. Together We Will Cure FA!kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com3tag:blogger.com,1999:blog-31287133.post-39517738228144617632013-09-16T14:45:00.000-07:002013-09-17T16:15:03.584-07:00Announcing the 2013 Ataxian Athlete Initiative Grant Recipients<div class="separator" style="clear: both; text-align: center;">
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The Friedreich’s Ataxia Research Alliance (FARA), in partnership with <a href="http://thefaproject.org/" target="_blank">The FA Project</a>, <a href="http://catrike.com/" target="_blank">Catrike</a>, <a href="http://www.texasirishcycling.com/donation" target="_blank">The Texas Irish Foundation</a>, and <a href="http://hottan.com/" target="_blank">UVA Sun Systems</a> are pleased to announce the 2013 Ataxian Athlete Initiative (AAI) grant recipients. The AAI provides adaptive cycling equipment to people with Ataxia who have demonstrated the desire to stay active and healthy despite their disabilities. Friedreich’s ataxia (FA) is a rare, progressive and life-shortening neuromuscular disease for which there is currently no cure.<br />
<br />
The AAI is managed by Ride Ataxia, a FARA program with a mission to promote active lifestyles among FA patients through cycling events across the United States geared towards raising awareness and much-needed research funds. The 2013 AAI was funded by The FA Project, Catrike, UVA Sun Systems, The Texas Irish Foundation, and a donation in memory of Gladys Lacativo.<br />
<br />
AAI grants are administered through a competitive application process. Applicants were invited to submit an essay summarizing their experience with Ataxia and their efforts to stay active. Individuals then selected the most appropriate adaptive cycling equipment to suit their abilities and described how such equipment would help them to reach their fitness goals. AAI grants are awarded based on the merit of the applications, equipment requested, and resources available in terms of funding.<br />
<br />
With the 2013 grant awards, the AAI has provided equipment for 21 individuals since its 2009 inception. In 2013, the AAI is sending equipment overseas for the first time to Ireland and Australia. Additionally Ride Ataxia teamed up with the Texas Irish Foundation for the first time specifically to provide equipment in the North Texas area.<br />
<br />
The 2013 AAI recipients are Lealan LaRoche of Atlanta, GA, Regina Russo of St. Petersburg, FL, Eric Pogulis of Elk River, MN, Liberty Griggs of Anchorage, AK, Alex Dagley of Frisco, TX, Barry Rice of Dublin, Ireland, and Terrence O’Hanlon of Cleveland Australia.<br />
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Previous recipients:<br />
<div style="text-align: center;">
Mary Dieteman - Catrike Expedition</div>
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Bill Ramsey - Top End Force R</div>
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View photos of all previous recipients here: <a href="http://rideataxia.org/aai">http://rideataxia.org/aai</a></div>
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<b>About FARA</b><br />
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. For more information, visit: <a href="http://curefa.org/">curefa.org</a><br />
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<b>About Ride Ataxia</b><br />
Ride Ataxia Cycling Events support research for Friedreich’s ataxia; a disease with no treatment, no cure, no hope...until now. In 2012, the Ride Ataxia program hosted six rides welcoming over 2,000 riders of all abilities who helped raise $500,000 for FA research. Ride Ataxia locations include Davis, Calif., Dallas, Texas, Philadelphia, Penn., Portland, Ore., Chicago, Ill. and Orlando, Fla.. For more information, visit: <a href="http://rideataxia.org/">rideataxia.org</a>kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com1tag:blogger.com,1999:blog-31287133.post-40862224259685922482013-04-09T11:32:00.000-07:002013-04-09T11:32:01.700-07:00Ataxian Athlete Initiative Now Accepting Applications for 2013 Grant Program<b><span style="font-family: Arial, Helvetica, sans-serif;">For Immediate Release </span></b><br />
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<i><span style="font-family: Arial, Helvetica, sans-serif;">Rare Disease Organization to Provide Adaptive Cycling Equipment to Deserving Applicants </span></i><br />
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<b><span style="font-family: Arial, Helvetica, sans-serif;">Downingtown, Penn.,(April 8, 2013)</span></b> – The Friedreich’s Ataxia Research Alliance (FARA),an organization dedicated to accelerating research leading to treatments and a cure for Friedreich’s ataxia (FA) has issued a “call for applications” for the 2013 Ataxian Athlete Initiative (AAI).<br />
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The AAI is a grant program that provides funding for equipment that enables eligible individuals with Ataxia to start or further develop their abilities in adaptive cycling. The AAI has empowered 14 individuals through adaptive cycling since 2009.<br />
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<tr><td class="tr-caption" style="text-align: center;">Mary on her Top End Excellerator XLT</td></tr>
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The AAI is managed by Ride Ataxia, a FARA program with a mission to promote active lifestyles among Ataxia patients through nationwide cycling events designed to raise awareness and much-needed research funds for FA. FA is a rare, progressive, life-shortening neuromuscular disease for which there is currently no cure.<br />
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To qualify, applicants must have been diagnosed with some form of Ataxia. All applications will be reviewed by a panel of Disabled Athletes, Ataxians, and other representatives of the ataxia community. Grants will be awarded to a limited number of applicants based on the following:<br />
<br />
<ul>
<li>Diagnosis – Applicants must have been diagnosed with some form of Ataxia to qualify </li>
<li>Applicant’s perceived character, drive, and commitment to an active lifestyle </li>
<li>Financial Need </li>
<li>Detailed research and knowledge of equipment requested </li>
</ul>
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Applicants are required to submit an essay summarizing their experience with Ataxia and their efforts to stay active. Individuals then select the most appropriate adaptive cycling equipment to suit their abilities and describe how such equipment would help them to reach their fitness goals. AAI grants are awarded based on the merit of the applications, equipment requested, and resources available in terms of funding.<br />
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As an introduction to the application process, FARA will be hosting a live webcast at two different times; one at the beginning of May and one at the beginning of June. Check <a href="http://rideataxia.org/aai">rideataxia.org/aai</a> for the latest info and registration for the webcast.<br />
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Applications will be accepted through July 1, 2013. All applicants will be notified by August 1, 2013 of award decisions. For additional information and to start an online application, visit: <a href="http://rideataxia.org/aai">rideataxia.org/aai</a>.<br />
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<tr><td class="tr-caption" style="text-align: center;">Patrick on his Catrike Trail</td></tr>
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The AAI program has experienced steady growth in both funding and the number of applications received since its 2009 inception. The 2012 program, held in partnership with <a href="http://thefaproject.org/" target="_blank">The FA Project</a>, <a href="http://catrike.com/" target="_blank">Catrike</a>, <a href="http://www.meltingpot.com/" target="_blank">The Melting Pot</a>, and UVA Sun Systems, provided funding for adaptive cycling equipment to seven individuals throughout the country, more than doubling its impact from the previous year.<br />
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<b><span style="font-family: Arial, Helvetica, sans-serif;">About FARA</span></b>: 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. For more information, visit: curefa.org. <br />
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<b><span style="font-family: Arial, Helvetica, sans-serif;">About Ride Ataxia</span></b>: Ride Ataxia Cycling Events support research for Friedreich’s ataxia (FA); a disease with no treatment, no cure, no hope…until now. In 2012, the Ride Ataxia program hosted six rides welcoming over 2,000 riders of all abilities who helped raise $500,000 for FA research. Ride Ataxia locations include Davis, Calif., Dallas, Texas, Philadelphia, Penn., Portland, Ore., Chicago, Ill.and Orlando, Fla. For more information, visit: rideataxia.org.kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com15tag:blogger.com,1999:blog-31287133.post-30564157552225185652013-03-08T08:42:00.000-08:002013-03-08T09:11:53.676-08:00Rider Profile: Mark<div class="separator" style="clear: both; text-align: center;">
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<b>Name:</b> Mark Solow <u></u><u></u></div>
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<b>Hometown:</b> Tulsa, OK<u></u><u></u></div>
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<b>Current Location:</b> Highland Village, TX<u></u><u></u></div>
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<b>Age:</b> 55 (will be 56 by the ride)<u></u><u></u></div>
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<b>Occupation:</b> Sales. (I sell network television time to ministries and humanitarian organizations.)<u></u><u></u></div>
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<b>Club:</b> Pathfinders Fun Cycling (<a href="http://facebook.com/cyclehighlandvillage" target="_blank">facebook.com/<wbr></wbr>cyclehighlandvillage</a>)<u></u></div>
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<b>About you in your own words:</b> I’m an organizer. Love putting (different) weekly rides together for all skill level riders. I love dogs and usually pull at least one behind my (Trek FX 7.5) hybrid bike. I love my carbon roadie too, but I can’t pull a trailer behind it. I’ve got three (grown) kids. My youngest is still in college and rides a fixie to class most days and pulls a pedicab behind his mountain bike on weekend to earn extra money. He’s the one that got me into cycling when he came home from college with his new fixed gear bike and asked me to ride bikes with him. The last time he asked me to ride bikes with him was when he was in elementary school! My 40 year old 10-speed hadn’t been off the ceiling hooks for 10 years. But, the Dawes Galaxy still worked. Off we went, and I loved it so much, that I’ve ridden almost every day since (Aug. 2010). <u></u><u></u></div>
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I love grill and roast my own coffee. I’m a Gideon and home group leader.</div>
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<b>What is your favorite local route?</b> Campions Trail in Irving or Grapevine lake south side. It’s a toss-up.<u></u><u></u></div>
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<b>What is your favorite item of cycling gear?</b> Love my sneaker-style cycling shoes with SPD cleats. I can walk around in them and still clip in on the bike.<u></u><u></u></div>
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<b>Longest ride?</b> 32 miles.<u></u><u></u></div>
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<b>Cycling goal for 2013?</b> 50 miler at or before Hotter ‘N Hell.<u></u><u></u></div>
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<b>Favorite cycling snack?</b> Honey waffles.<u></u><u></u></div>
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<b>Junk food Weakness?</b> Taco Bueno bean burrito with extra cheese.<u></u><u></u></div>
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<b>How many Ride Ataxia's for you so far?</b> 2. My first bike rally ever was the first Ataxia rally in TX in 2011 in Lewisville. I’ve ridden several different rallies since then. But, the first one set the bar.<u></u><u></u></div>
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<b>What distance will you be riding this year?</b> 25 most likely. Might try my road bike at 50 though.<u></u><u></u></div>
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<b>Tell us one thing you know about Friedreich's ataxia (FA) without using the internet.</b> I know that it a disease that often starts in adolescent years and effects the nervous system causing symptoms similar to CP or MS that effect muscle control. I know that most people are not as familiar with the disease as the other two even though it effects a lot of people.<u></u><u></u></div>
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<b>What do you love about the Ride Ataxia?</b> Of course I like the feeling that I’m helping a very worthy cause. But, Outback Steakhouse’s efforts to provide the best food to all participants gives me something to look forward to. The best shish ka bobs I’ve ever had were at 12 mile rest stop last year!</div>
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kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com18tag:blogger.com,1999:blog-31287133.post-29329133773107672842013-02-06T16:40:00.002-08:002013-02-06T16:40:34.326-08:00Rider Profile: Emily<!--[if gte mso 9]><xml>
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<div class="MsoNormal">
<b>Name:</b> Emily Penn<o:p></o:p></div>
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<b>Hometown:</b> Dallas, TX<o:p></o:p></div>
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<b>Current Location:</b>
Murphy, TX </div>
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<b>Age:</b> 20<o:p></o:p></div>
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<b>Occupation:</b> Student</div>
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<o:p></o:p></div>
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<b>Club:</b> <a href="http://www.cyclingcenterdallas.com/index.asp" target="_blank">Cycling Center Dallas</a></div>
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<o:p></o:p></div>
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<b>About you in your own words:</b>
I’m a Reese’s peanut butter cup eating, cowboy boot wearing, Eli Young
Band listening kinda gal!<o:p></o:p></div>
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<br /></div>
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<b>How did you get into cycling?</b><o:p></o:p></div>
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I was initially inspired by Kyle but after watching other
people cycle in Ride Ataxia, I felt called to do it myself. I was at times
excited about being a part of this event. At other times apprehensive, and not
sure if I could do it. Yet I knew I had to do it! To prove to myself that no
matter what this disease thought it could do to me, that my mind was stronger.
I did 6 miles at Ride Ataxia Dallas and felt so free. The feeling was amazing.
There were a few bruises but they were my "badge of honor." (or, you
could say, "there was an awesome flip on my trike during the ride but I
was proud of those bruises (my ego not so much).</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was so inspired that day that I believed I wanted to go
for 25 miles the next time. Then, when some amazing people with the <a href="http://www.texasirishcycling.com/" target="_blank">Texas IrishBike Club</a> and <a href="http://bikemart.com/" target="_blank">Richardson Bike Mart</a> gave me a trike, I knew it was what I had to
do! Cycling has given me my freedom. It gives me the time to forget what I
don't want to think about, and it reminds me of my strength.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>What is your favorite
local route?</b><o:p></o:p></div>
<div class="MsoNormal">
I ride this simple route by my house that I enjoy. It was
the first route I did by myself on my new trike. Each time I go a little
further, I am reminded of the sheer joy I felt that day, reminded of how strong
I really am & how much I have accomplished.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>What is your favorite item of cycling gear?</b><o:p></o:p></div>
<div class="MsoNormal">
My FARA jersey of course!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>Longest ride?</b><o:p></o:p></div>
<div class="MsoNormal">
15 miles</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>Cycling goal for 2013?</b><o:p></o:p></div>
<div class="MsoNormal">
Complete the 50 mile route at the ‘’Hotter Than Hell’ ride
in August in Wichita, TX<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>Favorite cycling snack?</b><o:p></o:p></div>
<div class="MsoNormal">
Not gels!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>Junk food Weakness?</b> </div>
<div class="MsoNormal">
It's a toss up between Rice Krispy Treats and the
aforementioned Reese's :)<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>How many times at Ride Ataxia Dallas for you so far?</b><o:p></o:p></div>
<div class="MsoNormal">
I volunteered the first 2, rode 6 miles in my first ride
last year and this year I am doing 25 miles with some incredible family and
friends!!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>What distance will
you be riding this year?</b><o:p></o:p></div>
<div class="MsoNormal">
I plan to rock 25 miles!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>Tell us one thing you know about Friedreich's Ataxia (FA)
without using the internet.</b><o:p></o:p></div>
<div class="MsoNormal">
It is a progressive, debilitating and life-shortening
neuromuscular disease. I have it but it DOES NOT have me!<o:p></o:p></div>
<div class="MsoNormal">
<o:p> </o:p> </div>
<div class="MsoNormal">
<b>What do you love about Ride Ataxia?</b><o:p></o:p></div>
<div class="MsoNormal">
The dream for the future, the freedom it offers, the hope
that it fuels and the high-fives along the way.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="http://rideataxia.org/">rideataxia.org</a></div>
<div class="MsoNormal">
<o:p></o:p></div>
<!--EndFragment-->kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com38tag:blogger.com,1999:blog-31287133.post-86235406042410705962012-12-05T13:04:00.000-08:002012-12-05T13:07:47.774-08:00Announcing the 2012 AAI Recipients<b>We are very excited to announce the recipients of the 2012 Ataxian Athlete Initiative!</b><br />
<br />
The AAI funds the purchase of adaptive cycling equipment for people with Ataxia so they can participate in Ride Ataxia and have cycling adventures of their own.<br />
<br />
The AAI program has experienced steady growth in both funding and the number of applications received since its 2009 inception. Because of a strong partnership with <a href="http://thefaproject.org/">The FA Project</a>, <a href="http://catrike.com/">Catrike</a>, <a href="http://meltingpot.com/">The Melting Pot</a>, and UVA Sun Systems the AAI more than doubled its impact from the previous year, providing funding for adaptive cycling equipment to seven individuals throughout the country.<br />
<br />
The 2012 AAI recipients are Crystal Millering of High Ridge, Mont., Hamid Mehrizi of Dublin, Ohio, Nicole Kramer of Villa Park, Ill., Tricia Herman-Maul of Yorkshire, N.Y., Justin Hernandez of Graham, Texas, Mary Dieteman of Douglassville, Penn. and Lauren Williams of Glen Burnie, Md.
<br />
<br />
Read and share the Press Release <a href="http://www.businesswire.com/news/home/20121205006316/en" target="_blank">HERE</a>.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://sphotos-a.xx.fbcdn.net/hphotos-snc7/407741_3855609024324_949620287_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://sphotos-a.xx.fbcdn.net/hphotos-snc7/407741_3855609024324_949620287_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tricia Herman-Maul on her new Catrike<br />
<br /></td></tr>
</tbody></table>
"My physical abilities may be changing but, my ability to achieve greatness is stronger than ever. In High School I played basketball, swam, ran, and owned a green 10 speed bike which I rode everywhere. I have not owned a bike in the past 15 years and until recently forgot how great that freedom felt. While test riding three different trikes I never stopped smiling. I felt like my physical limitations were no longer a factor as my three children chased after me laughing. FA has taken my ability to run and I do many tasks much slower and cautiously than most, but that was all forgotten on the trike." - Tricia Herman-Maulkyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com28tag:blogger.com,1999:blog-31287133.post-44810796475829715202012-11-09T19:26:00.000-08:002012-11-09T19:26:18.712-08:00Ride Ataxia 2013 Dates<div class="separator" style="clear: both; text-align: center;">
<a href="http://sphotos-b.xx.fbcdn.net/hphotos-ash3/550101_543501459009911_1491148960_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="165" src="http://sphotos-b.xx.fbcdn.net/hphotos-ash3/550101_543501459009911_1491148960_n.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
2012 was an incredibly successful year with two new locations, a total of 6 rides, 2,230 participants and over $500,000 in fundraising.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://sphotos-a.xx.fbcdn.net/hphotos-snc6/182511_543499339010123_1036688500_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://sphotos-a.xx.fbcdn.net/hphotos-snc6/182511_543499339010123_1036688500_n.jpg" width="320" /></a></div>
<br />
<br />
Just as important, or perhaps even more important is the record number of people we had riding trikes and handcycles, many of whom did not know it was possible to move so fast and far under their own power.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://sphotos-a.xx.fbcdn.net/hphotos-snc7/301740_417040398322685_302903349_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="255" src="http://sphotos-a.xx.fbcdn.net/hphotos-snc7/301740_417040398322685_302903349_n.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
As we look to carry that momentum forward to 2013 we have set the dates and can't wait to see you there.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<b><span style="font-size: large;">Here are the 2013 dates:</span></b></div>
<div class="separator" style="clear: both; text-align: left;">
</div>
<ul>
<li><b><span style="font-size: large;">Dallas - March 23</span></b></li>
<li><b><span style="font-size: large;">NorCal - June 1</span></b></li>
<li><b><span style="font-size: large;">Chicago - July 21</span></b></li>
<li><b><span style="font-size: large;">Portland - Late September</span></b></li>
<li><b><span style="font-size: large;">Philadelphia - October 13</span></b></li>
<li><b><span style="font-size: large;">Orlando - November 3</span></b></li>
</ul>
kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com28tag:blogger.com,1999:blog-31287133.post-10292334464585350012012-04-21T15:50:00.000-07:002012-04-30T20:22:55.492-07:00At NorCal 2012 We Ride For Phillip<div class="separator" style="clear: both; text-align: center;">
<a href="http://a3.sphotos.ak.fbcdn.net/hphotos-ak-ash4/217643_10150219866203417_523028416_8506757_7142906_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://a3.sphotos.ak.fbcdn.net/hphotos-ak-ash4/217643_10150219866203417_523028416_8506757_7142906_n.jpg" width="172" /></a></div>
<br />
Why do we ride?<br />
<br />
We ride to build strength. We ride to see the countryside. We ride to give ourselves a free pass to chow down at the rest stops and on Outback food at lunch.<br />
<br />
We ride because we love someone with Friedreich's ataxia.<br />
<br />
We ride because we have Friedreich's ataxia.<br />
<br />
We ride to connect with old friends. We ride to remember old friends. We ride for different reasons and for the same reason --- WE RIDE TO CURE FA!<br />
<br />
On May 5, I will ride for myself, for my family, for all my friends living with FA, and for my friend I lost to FA. The third annual Ride Ataxia Nor Cal is dedicated to <a href="http://rideataxia.blogspot.com/2011/04/ride-ataxia-norcal-dedicated-to-memory.html">Phillip Bennett</a>. Phillip's close friend Jamie Richards wrote at his passing in March 2011: "Too many of us wait. And wait, and wait. Someday, we tell ourselves, we'll say it, start it, try it, do it or complete it. Phillip didn't wait. He swam and skied. He rode roller coasters. He rappelled and river rafted. He even went spelunking. He made friends. He laughed. He partied. He crammed 72 years of life into 27."<br />
<br />
Phil - We miss you. We continue to think of you and we will ride for you.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://sphotos.xx.fbcdn.net/hphotos-snc7/2312_75451558416_523028416_2147095_4198_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="274" src="http://sphotos.xx.fbcdn.net/hphotos-snc7/2312_75451558416_523028416_2147095_4198_n.jpg" width="320" /></a></div>
<br />
<br />
The inside collar of every jersey will have a small memorial.<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioWz5fr89ibQC5pg0aqLj8BDTcsVQ6R7o8vjKug33XNGX6zKuHkdQa4OMSG32AT5kcpaDUtStZr7UW6PlfIXetJOZLHE5l9ws5kwOHfGXWomo1OUS8Dljhd63dn4AnratSiJEC/s1600/NORCAL+BLOG.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="154" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioWz5fr89ibQC5pg0aqLj8BDTcsVQ6R7o8vjKug33XNGX6zKuHkdQa4OMSG32AT5kcpaDUtStZr7UW6PlfIXetJOZLHE5l9ws5kwOHfGXWomo1OUS8Dljhd63dn4AnratSiJEC/s320/NORCAL+BLOG.png" width="320" /></a></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRdmpJHujOSOIC9CeqDr9zWaCp4UnKD9_cehgxrVv0eoqOjcSsrf6EhWaZi6J-9cfNO17nz3E5FY73r-iawGI10EAr7kugPD4d3iISTn9Mnzf4SZQXiYBLD-ACSdhtM2uUrLbT/s1600/Phil+Blog.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRdmpJHujOSOIC9CeqDr9zWaCp4UnKD9_cehgxrVv0eoqOjcSsrf6EhWaZi6J-9cfNO17nz3E5FY73r-iawGI10EAr7kugPD4d3iISTn9Mnzf4SZQXiYBLD-ACSdhtM2uUrLbT/s1600/Phil+Blog.png" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
We will also have these stickers to bring Phillip with us as we ride.</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-sfL9cB6/0/M/IMG0783-M.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-sfL9cB6/0/M/IMG0783-M.jpg" width="213" /></a></div>
To register, ride, and raise funds in honor of Phillip visit the <a href="http://rideataxia.org/norcal" target="_blank">Ride Ataxia NorCal Event Site</a>.kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com0tag:blogger.com,1999:blog-31287133.post-40955082388538507322012-03-12T12:25:00.007-07:002012-03-16T13:52:02.655-07:00Shanna Armstrong Joins The Team!<div class="separator" style="clear: both; text-align: center;"><a href="http://bike.blogware.com/Interviews/Shanna/SA4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://bike.blogware.com/Interviews/Shanna/SA4.jpg" width="212" /></a></div><br />
Le tour Ultime was a 2500 mile race on the same course as Le Tour De France. The difference is that Le Tour Ultime was nonstop, so rather than stopping overnight after each stage racers pedaled through long days and nights toward the finish line. This race started in 2006 and was cancelled starting in 2008 because many of the winners decided it was too hard.<br />
<br />
<a href="http://raceacrossamerica.org/" target="_blank">Race Across America (RAAM)</a> is a non stop 3,000+ mile race from West Coast to East Coast, with over 100,000 ft of climbing. RAAM is regarded as the World's Toughest Cycling Event.<br />
<br />
<a href="http://ultramanlive.com/" target="_blank">The Ultraman Championship</a> is a double Ironman and then some. The race includes a 6.2 mile swim, 261.4 mile cross country bike ride, and a 52.4 mile ultra-marathon run.<br />
<br />
Completing any one of these races is a superhuman feat and a lifelong goal for many people. Some might even compare curing FA to the accomplishment of completing one of these races.<br />
<br />
An amazing person named <a href="http://www.shannaarmstrong.com/" target="_blank">Shanna Armstrong</a> has joined the FARA/Ride Ataxia team and her goal is to cure this disease. Shanna is super human. Some say she is the greatest female ultra-athlete on the planet. She has not only completed all of the above events, she has several first place finishes under her belt.<br />
<br />
Shanna's Resume includes:<br />
<br />
<ul><li>1st place in Le Tour Ultime, co-ed division 2007</li>
<li>2-time RAAM Champion, 2005, 2006</li>
<li>6-time Ultraman Champion, 2003, 2004, 2005, 2006, 2007, 2009. Record: Second fastest Women's swim. Record: Third fastest Women's overall time.</li>
</ul><br />
Shanna is a certified triathlon coach, physical therapist, and massage therapist. Shanna will ride with us in <a href="http://rideataxia.org/dallas" target="_blank">Denton, TX on March 24</a> and will be available for questions and conversation about nutrition, training, goal setting, and anything extreme.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://bike.blogware.com/Interviews/Shanna/SA1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://bike.blogware.com/Interviews/Shanna/SA1.jpg" width="212" /></a></div><br />
<br />
Shanna has experience in conquering the biggest milestones in life and now she has set her sights on a cure for FA. <br />
<br />
Come ride with us! See you there!kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com1tag:blogger.com,1999:blog-31287133.post-80165722513742120142011-12-12T09:32:00.000-08:002011-12-15T10:30:00.448-08:00Ride Ataxia Exceeds $1 Million In Funded ResearchRide Ataxia is making a big impact toward treatments for FA by directly funding research. When every day is critical to each of us it is important to recognize milestones as they pass to keep ourselves motivated and pushing forward as fast as possible.<br />
<br />
The new FARA newsletter will be hitting mailboxes over the next couple of weeks and there is one section of special interest to anyone who has supported Ride Ataxia either as a donor or a participant. The section is at the end of the Update on FARA's Research Grant Program and it is called Recently Awarded Named Grants. This section includes the descriptions of two research grants which put the total funded research for Ride Ataxia at a staggering $1.2 million since 2007. The first is named The <a href="http://rideataxia.blogspot.com/2011/04/ride-ataxia-norcal-dedicated-to-memory.html">Phillip Bennett</a> Translational Research Award in honor of one of the original pioneers of FA research fundraising. This award is made possible with funds from Ride Ataxia NorCal and the Phillip Bennett Memorial Fund. The second award is called The Kyle Bryant Translational Research Award. The title and description of the two newly awarded grants is at the bottom of this post.<br />
<br />
There are a couple of reasons to be excited about these two specific grants.<br />
<ol><li>The Phillip Bennett Translational Research Award, given to Gino Cortopassi at UCDavis, is for the continuation of a project that started with funds from Ride Ataxia in 2009. Dr. Cortopassi has been hard at work and has produced some impressive results with his high throughput screening program in the last two years, and we want help advance his work towards the finish line. An additional exciting factor about Dr. Cortopassi's project is that he is looking at existing drugs that have already been approved for use in humans which carries significant potential to reduce the development time to clinical trials in FA.</li>
<li>Dr.Sarsero's project is a new approach to FA which aims to fix the root cause of the disease - a defective gene. Gene therapy is an area of research that FARA's scientific advisers have identified as a need because of the potential for a profoundly curative therapy. Dr. Sarsero's research is part of the plan to fill that need.</li>
</ol>Ride Ataxia funded grants have advanced three drug candidates in our <a href="http://curefa.org/pipeline.html" target="_blank">treatment pipeline</a> and will add new candidates in the near future. For a full list of all the other Ride Ataxia funded grants and progress updates please check: <a href="http://rideataxia.org/research.php">http://rideataxia.org/research.php</a>. It is clear that Ride Ataxia has made a significant, tangible impact on advancing research. Further updates to these projects will be posted as they become available.<br />
<br />
When Ride Ataxia originated with our first cross country trip in 2007 our goal was to raise $30,000. We had no idea where the money was going to come from, we just threw the goal out there and gave it our best. We raised $40,000 during that trip and were amazed by the generosity of our friends and family. Ride Ataxia provided a platform from which to talk about FA with people who cared about us and they responded with immense generosity. Over the past few years Ride Ataxia has provided the platform for thousands of people to talk about FA from a place of pride and empowerment rather than a place of fear and helplessness.<br />
<br />
We reach our goals because of collaboration from friends, family, cycling enthusiasts and sponsors; the most significant of which is the steadfast support of Outback Steakhouse.<br />
<br />
As we cross the $1 million mark we think about where we have come from with our sights fixed on the finishline: treatments and a cure for FA.<br />
<br />
Recently awarded grants:<br />
<br />
<b>Phillip Bennett Translational Research Award</b><br />
Principal Investigator: Dr. Gino Cortopassi,<br />
University of California, Davis<br />
<br />
Repurposing existing approved drugs for FRDA therapy using a novel high-throughput screening assay and a library of 1640 drugs that have already been approved for use in humans, Dr. Cortopassi identified 40 drugs that protect FRDA patient cells from death. The screening assay is based on the sensitivity of FRDA fibroblasts to the thiol oxidant diamide. The goal of this project is to determine the mechanism of action of these protective drugs. Dr. Cortopassi will also examine their relative potency and their efficacy in cell and animal models in preparation for clinical testing in humans. Because these drugs have already been approved by the FDA for other purposes, this “repurposing” approach has substantial potential to reduce the lag time between laboratory testing in cell and animal models and approval of the drug as a treatment for FRDA. Thus, determining the mechanism and efficacy of these drugs is a top priority, because of the potential for rapid translation to FRDA patients.<br />
<br />
<b>Kyle Bryant Translational Research Award</b><br />
Principal Investigator: Dr. Joseph Sarsero, Murdoch<br />
Children’s Research Institute, Melbourne, Australia<br />
<br />
Correction of FRDA iPS cells by non-viral gene therapy.<br />
FRDA is an inherited progressive disorder of the nervous system and muscles that results in the inability to coordinate voluntary muscle movements. Improper heart function is also a common and life-threatening condition of the disease. The genetic defect that causes FRDA results in reduced levels of an essential protein termed frataxin in all cells of the body. Stem cell therapy has the potential to repair or replace damaged tissues and restore organ function in individuals with FRDA. Major advances in stem cell technologies have led to the development of ‘embryoniclike cells’ from adult human tissue. These cells, known as induced-pluripotent stem (iPS) cells, have essentially the same properties as embryonic stem cells, and thus can be used to derive any mature cell type. Prior to the transplantation of nerves or heart cells derived from FRDA iPS cells, it will be necessary to restore frataxin protein to levels compatible with normal cell function. In this project Dr. Sarsero and his collaborator, Dr. Mirella Dottori, propose a means to correct the defect inherent in FRDA iPS cells by a gene therapy approach that will restore normal FRDA gene expression and does not leave any ‘genetic scars’ in the cells. The strategy addresses major safety concerns for the clinical use of iPS cells and should facilitate compliance with regulatory agency requirements for the approval of the use these cells in transplantation medicine.kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com0tag:blogger.com,1999:blog-31287133.post-84165302244581136972011-08-02T10:49:00.000-07:002011-08-02T11:42:34.942-07:00Ride Ataxia OrlandoBuilding on the momentum we established with our ride in Tampa, FL last year, the Orlando location will provide a well supported, challenging ride for all riders. The Orlando ride will feature 16, 25, and 50 mile routes allowing participation from all ability levels. All routes will feature strong SAG support, fully stocked rest stops, and what has been called "The best post ride food ever" provided by <a href="http://outback.com/">Outback Steakhouse</a> and <a href="http://carrabbas.com/">Carrabba's Italian Grill</a>. All routes will start and end at Waterfront Park in <a href="http://www.cityofclermontfl.com/">Clermont, FL</a>.<br />
<br />
<ul><li>The 16 mile route will take place on the South Lake Trail heading east with a rest stop and turn around point at mile 8. This out-and-back route will give riders the option to ride a shorter length if they choose. View the 16 mile route here: <a href="http://rideataxia.org/orlando/images/16map.png">http://rideataxia.org/orlando/images/16map.png</a>.</li>
<li>The 25 mile route will travel around Lake Minneola, out to Groveland to our first rest stop at Lake David Park and back. This route will include varied traffic conditions and is recommended for intermediate and advanced riders. View the 25 mile route here: <a href="http://rideataxia.org/orlando/images/25map.png">http://rideataxia.org/orlando/images/25map.png</a>.</li>
<li>The 50 mile route will travel around lake Minneola, out to Groveland, up through Mascotte, around through Ferndale and back to Clermont. This route will also include varied traffic conditions and is recommended for advanced riders only. View the 50 mile route here: <a href="http://rideataxia.org/orlando/images/50map.png">http://rideataxia.org/orlando/images/50map.png</a>.</li>
</ul><div>The Orlando location will provide access to one of the country's premier cycling atmospheres and will allow us to partner with strong teams from <a href="http://outback.com/">Outback Steakhouse</a>, <a href="http://carrabbas.com/">Carrabba's Italian Grill</a>, and <a href="http://catrike.com/">Catrike</a>. The ride will also receive support from <a href="http://coca-cola.com/">Coca-Cola</a> and <a href="http://brownandcaldwell.com/">Brown and Caldwell</a>.</div><div><br />
</div><div>We look forward to seeing you on the road or trail for <a href="http://rideataxia.org/orlando">Ride Ataxia Orlando</a> on November 6, 2011.</div><div><br />
</div><div>For all the details and to register please visit <a href="http://rideataxia.org/orlando">rideataxia.org/orlando</a>.</div><div><br />
</div>kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com7tag:blogger.com,1999:blog-31287133.post-20641733017832654872011-06-29T12:30:00.000-07:002011-06-29T12:30:00.954-07:00Registration is open for Ride Ataxia Philadelphia 2011<a href="http://rideataxia.org/philly">The 3rd Annual Ride Ataxia Philadelphia</a> will offer 5, 10, 25, and 50-mile route options starting and ending at Limerick Community Park in Limerick, PA on October 9, 2011. The ride will once again feature well marked courses and cue sheets, fully stocked rest stops, and strong SAG/mechanical support provided by <a href="http://www.bikesportbikes.com/frontpage.cfm">Bike Sport</a>, <a href="http://www.tricountybicycles.net/">Tri County Bicycles</a>, and Spinners Mobile Bike Repair. Additionally the ride includes what has been called "the best post-ride food ever!" with a delicious meal provided by our presenting sponsor <a href="http://outback.com/">Outback Steakhouse</a> plus <a href="http://carrabbas.com/">Carrabba's Italian Grill</a> and <a href="http://bonefishgrill.com/">Bonefish Grill</a>. You will not leave hungry!<br />
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Last year Ride Ataxia Philadelphia welcomed 400 riders and raised $150,000 for Friedreich's ataxia (FA) research!<br />
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Please follow these simple instructions to guide you through the registration and fundraising process for Ride Ataxia Philadelphia.</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="border-collapse: collapse; font-family: inherit;">1. Register for the ride</span></div><div style="border-collapse: collapse;"><ul><li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">Go to <span class="Apple-style-span" style="color: #4263ab;"><a href="http://rideataxia.org/philly">rideataxia.org/philly</a></span></span></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">Click the button at the upper left that says "Register to Ride". This will take you to the Ride Ataxia Philadelphia Active.com <span class="il">registration</span> page</span></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">At the Active.com <span class="il">registration</span> page, click on the green button to the upper right that says "Register Now"</span></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">Pick your preferred ride length (If you are registering as a team of 10 to receive the discounted rate, you must choose a team Captain to create the team. After the team has been created each individual team member can register and find the team under the name created by the captain, max is 10 per team for registration), read and agree to the waivers, fill in your date of birth and click "Agree and Continue"</span></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">Fill out all your information and answer the questions. Scroll down and click "continue"</span></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">Fill in your payment information and click "Pay Now". Note: Your <span class="il">registration</span> fee goes to <a href="http://curefa.org/">FARA</a>; the "Processing Fee" goes to active.com. </span></li>
</ul></div><div style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="font-family: inherit;">2. Now that you have registered to ride, you need to create your personal fundraising page...There are two ways to do this. </span></div></div><div style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="font-family: inherit;"><br />
</span></div></div><div style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="font-family: inherit;"> a. After you register to ride (step 1 above) you will receive two confirmation emails, one is a receipt for your payment and one has instructions on how to set up your fundraising page. Follow the instructions in the email.</span></div></div><div style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="font-family: inherit;"><br />
</span></div></div><div style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="font-family: inherit;"> b. Follow the instructions below:</span></div></div><div style="border-collapse: collapse;"><ul><li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">Go to <span class="Apple-style-span" style="color: #4263ab;"><a href="http://rideataxia.org/philly">rideataxia.org/philly</a></span></span></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">Click the button at the upper left that says "Donate Now". This will take you to the event fundraising site.</span></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">Click on the link in the uper left that says "register"</span></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">If you were a participant last year, choose "I already have an account", enter your email and password and then click next (please skip the next bullet). If this is your first Ride Ataxia event choose "I need to create an account" (this is completely separate from the active.com <span class="il">registration in step #1</span>) then click "next"</span></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">Fill in your information and click "next"</span></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">Set your fundraising goal, AIM HIGH! Enter your display name and click "next"</span></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">If you would like to create a team choose "Create a team". If your friends have already created a team that you want to join. click "search for an existing team". Note: Everyone on a team will all have an individual fundraising page with an individual total and those individual totals will be combined for the team total on the team page. All team and individual totals will be combined on the event page. <i>Note: there is no limit to the number of people you can have on a fundraising team. If you registered 2 teams of 10 in step 1 above they can all be on the same team for fundraising.</i> If you do not want to join a team choose "Do not join a team". Click "next".</span></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">confirm your info and click "next".</span></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">you will receive a confirmation email which will take you to your page where you can upload a picture and write a personal message to your potential donors. Here is an example: </span><a href="https://sna.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/raphiladelphia/individual.do?participationRef=968.0.418554997">https://sna.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/raphiladelphia/individual.do?participationRef=968.0.418554997</a></li>
<li style="margin-left: 15px;"><span class="Apple-style-span" style="font-family: inherit;">copy the link for your page, paste it in an email or on facebook, twitter...tell everyone about your efforts to help cure FA!</span></li>
</ul></div>kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com15tag:blogger.com,1999:blog-31287133.post-91468531149778323802011-06-14T12:47:00.000-07:002011-06-14T13:14:08.333-07:00Multiply Your Vote with Power VotesFrom the previous post you know that The Ataxian documentary is in the running for a $50k grant from the Pepsi Refresh Project (<a href="http://refresheverything.com/theataxian">refresheverything.com/theataxian</a>).<br />
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The film needs this money because the footage will need sound and color work which will need to be contracted out. The cost will be roughly $50k. The voting will be open for a few more weeks and the top 10 ideas with the most votes will be awarded $50k.<br />
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Voting has been open since June 1 and your efforts to date have earned us a ranking of 21 out of hundreds of ideas. This is pretty awesome, thank you. <br />
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As a reminder there are three ways to vote and you can do one or all three.<br />
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<ol><li>Send a text daily to the number "73774" and write "106922" in the body of the message.</li>
<li>Cast a vote daily either through your Facebook login or directly through Pepsi <a href="http://refresheverything.com/theataxian">refresheverything.com/theataxian</a></li>
<li>Buy Pepsi products that have the Pepsi Refesh Power Vote, Enter the code at <a href="http://refresheverything.com/theataxian">refresheverything.com/theataxian</a> to cast your Power vote.</li>
</ol><br />
I want to address #3 on this list because I think it is the key to success. With power votes, you enter the little code on the inside of the yellow cap and you can get 5, 10, 15, 25, 50 or 100 votes per code. <b>But here's the kicker: you can power vote up to 10 times per day.</b> So yesterday I did a little experiment. I went to the store and bought 10 Pepsi's (2 20 oz. and 8 2 liters) and I power voted 10 times. In the end I got a total of 165 votes. We are currently 21st and we need to get into the top 10. I am confident that power votes are needed to get there. I am not suggesting that we do not need the single votes because we need it all and I am not suggesting that you go out and buy 10 Pepsi's each every day, I just wanted to bring attention to power votes and how they might benefit our effort. Even with one power vote per day you will at the very least have 5 votes per day instead of one.<br />
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For those who do not have any idea what a power vote is here is a little tutorial with help from refresheverything.com:<br />
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Look for power vote codes on specially-marked Pepsi products. Look for bottles with yellow caps or any Pepsi product that says "Power Votes" on it (limited to Pepsi, Diet Pepsi, and Pepsi Max). The Code will be under the bottle cap or printed on the inside of your multi-pack. For example:<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/21e7db54-01dc-4c76-aca2-1d4e5916f770/2011-06-14_1424.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="244" src="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/21e7db54-01dc-4c76-aca2-1d4e5916f770/2011-06-14_1424.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Click Image For Larger View</td></tr>
</tbody></table>After you have located your Power Vote Code visit <a href="http://refresheverything.com/theataxian">refresheverything.com/theataxian</a>:<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/12df1fe0-22e1-45b1-af3c-2ec5fdbcab6d/2011-06-14_1437.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="242" src="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/12df1fe0-22e1-45b1-af3c-2ec5fdbcab6d/2011-06-14_1437.png" width="320" /></a></div><br />
Above the big button that says VOTE FOR THIS IDEA is a link with the text "Power Vote For This Idea", click that link:<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/25a39090-dc9f-4a2e-a78c-49df17933012/2011-06-14_1441.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/25a39090-dc9f-4a2e-a78c-49df17933012/2011-06-14_1441.png" width="320" /></a></div><br />
You will be taken to a page that looks like the one below. Click on the Button That says "Sign In."<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/b33825d5-e541-4ad3-b0ce-4c072ee29ced/2011-06-14_1444.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="225" src="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/b33825d5-e541-4ad3-b0ce-4c072ee29ced/2011-06-14_1444.png" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div>You will be given the choice to sign in with Facebook or through Pepsi. However you must login with Pepsi to enable power voting. So if you have a Pepsi login choose "Sign in with Pepsi." If you don't already have a Pepsi login choose "Sign up", you only have to give them your first name, last name, email and birth date to create an account.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/fa2f5396-c3bc-478f-a91a-7b8a37f982ee/2011-06-14_1451.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="187" src="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/fa2f5396-c3bc-478f-a91a-7b8a37f982ee/2011-06-14_1451.png" width="320" /></a></div>Sign up screen:<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/c490a9c2-18de-4e33-a1f8-121ff1199e42/2011-06-14_1500.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="278" src="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/c490a9c2-18de-4e33-a1f8-121ff1199e42/2011-06-14_1500.png" width="320" /></a></div>The "Prove you're not a robot" code is a little tricky sometimes but keep trying, you'll get it.<br />
<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/bbf23697-1096-4d16-8174-4731f01906e4/2011-06-14_1506.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="159" src="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/bbf23697-1096-4d16-8174-4731f01906e4/2011-06-14_1506.png" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div>After you are logged in you will find a screen that will allow you to enter your power vote code:<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/8cbea4d1-3055-4ca9-98cf-8ea21a02f280/2011-06-14_1511.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="126" src="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/8cbea4d1-3055-4ca9-98cf-8ea21a02f280/2011-06-14_1511.png" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div>Enter your code and click "Activate." Pepsi will work it's magic as it determines the value of your code. This one was worth 15 votes:<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/42f132a5-dcfa-4eaa-bbf7-097b79912d76/2011-06-14_1514.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="154" src="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/42f132a5-dcfa-4eaa-bbf7-097b79912d76/2011-06-14_1514.png" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div>Now click link that says "return to your last idea." It may take you to The Ataxian idea page (this is where you want to be) or it may take you to "secure.refresheverything.com/index" if it does this just replace the word "index" with "theataxian" so you end up at "secure.refresheverything.com/theataxian" which should look like this:<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/fa9385c2-f44f-4238-a8a0-e2b0d91fe23d/2011-06-14_1524.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="243" src="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/fa9385c2-f44f-4238-a8a0-e2b0d91fe23d/2011-06-14_1524.png" width="320" /></a></div>Click on the big yellow button that says "Power Vote" aaand your power votes will be applied to The Ataxian! You just multiplied your vote by at least 5!<br />
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If you have more than one code you are not done! Simply click on the link to the lower right that says "Activate Power Voting" which will bring you back to the screen where you can enter another code!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/945801b3-31e4-476e-8b18-351c829674bb/2011-06-14_1529.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="110" src="http://content.screencast.com/users/kyleabryant.com/folders/Jing/media/945801b3-31e4-476e-8b18-351c829674bb/2011-06-14_1529.png" width="320" /></a></div><br />
The Pepsi site is a little finicky sometimes and it may log you out from time to time as you are going through the power voting process but just log back and keep plugging away. The time you spend on this is appreciated by thousands of people all around the world. Thank you for your time and effort.<br />
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Use up to 10 codes a day to help us get closer to the completion of this film and closer to a cure for FA!kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com297tag:blogger.com,1999:blog-31287133.post-63943276406617278142011-06-01T18:41:00.000-07:002011-06-01T18:44:52.519-07:00Vote for The Ataxian documentary in The Pepsi Refresh ProjectThe Ataxian documentary which chronicles Team FARA’s 2010 Race Across America journey is in the running for a $50,000 Pepsi Refresh grant but <b>THEY NEED YOUR HELP</b>. The Pepsi Refresh Project will award 10 grants to the Arts & Music $50,000 applicants receiving the most votes in the month of June. If they win, The Ataxian filmmakers will use the funds to help cover their post production costs.<br />
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You can vote for The Ataxian starting today.<br />
<iframe frameborder="0" height="250" scrolling="no" src="http://www.refresheverything.com/embed/theataxian?heading=Vote%20for%20this%20idea%20on%20Pepsi%20Refresh!" width="300"></iframe><br />
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You can either vote online from the above link and/or text your vote daily (Text 106922 to 73774). Voting continues through the whole month of June, and we need everyone to vote everyday. If you are a Pepsi drinker, you can also increase the power of your vote by entering the Power Vote code on select Pepsi products.<br />
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Please share this information with family and friends. We believe this film not only has great potential to raise awareness for FA but is also a universal story on the strength of the human spirit. Here is the link that you can send to family and friends: <a href="http://refresheverything.com/theataxian">http://refresheverything.com/theataxian</a>.<br />
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View the trailers for the film here:<br />
<iframe allowfullscreen="" frameborder="0" height="255" src="http://www.youtube.com/embed/FMD6YfZeXV8?hd=1" width="400"></iframe><br />
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<iframe allowfullscreen="" frameborder="0" height="255" src="http://www.youtube.com/embed/O7SzdySFOEI?hd=1" width="400"></iframe>kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com0tag:blogger.com,1999:blog-31287133.post-30578951127879096572011-05-26T11:24:00.000-07:002011-05-31T11:50:23.396-07:00Ride Ataxia NorCal - True ProgressRide Ataxia NorCal took place on May 14, 2011 and was a day of comraderie and true progress toward our goal of treating Friedreich's ataxia (FA). The ride included more than 300 riders who helped raise over <a href="https://sna.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/ranorcal2011/">$100,000</a> for FA research!<br />
<div><br />
</div><div>The weekend Started with packet pickup at <a href="http://kensbikeski.com/">Ken's Bike and Ski</a> on Friday afternoon. We set up in the parking lot at Ken's and we distributed a few packets and shopped for new bike gear in Ken's. This was the first time everyone had been together in a year so it was great to see everyone including <a href="https://sna.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/ranorcal2011/team.do?participationRef=968.0.367596624">Team Bridgman</a>, <a href="https://sna.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/ranorcal2011/team.do?participationRef=968.0.336238609">Team Kiela</a>, and <a href="https://sna.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/ranorcal2011/team.do?participationRef=968.0.366134510">The Rupeloton</a>.</div><div><br />
</div><div>After Packet pickup we all headed over to the <a href="http://www.usbhof.org/">US Bicycling Hall of Fame (USBHOF)</a> for a reception hosted by our generous partners at <a href="http://brownandcaldwell.com/">Brown and Caldwell</a>. At the reception we saw some really cool bikes and learned about the history of bikes. During this intense history lesson we had appetizers by <a href="http://www.outback.com/">Outback Steakhouse</a>, wine, beer, soft drinks, and good conversation as we caught up with more friends we had not seen for a while.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-NvhwmVG/0/L/IMG0738-L.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-NvhwmVG/0/L/IMG0738-L.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Team Bridgman came down from Seattle, WA</td></tr>
</tbody></table><br />
</div><div class="separator" style="clear: both; text-align: center;"></div><div>During the reception at the USBHOF we honored a couple people including Phillip Bennett, the force behind Sunset on FA (SOFA). Unfortunately Phillip passed away earlier this year but his spirit lives on through the 2011 Phillip Bennett Translational Research Award which will be funded with proceeds from the ride combined with funds from Phillip's memorial fund. Find out a little more about Phillip <a href="http://rideataxia.blogspot.com/2011/04/ride-ataxia-norcal-dedicated-to-memory.html">HERE</a>.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-Tw92r5P/0/M/IMG0786-M.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-Tw92r5P/0/M/IMG0786-M.jpg" width="320" /></a></div><br />
</div><div>That night we also honored Wally and Mary Krill who have been part of the Ride Ataxia Movement since the very beginning. Wally and Mary provided SAG support with their motor home during Ride Ataxia I, II, III, and they were among the biggest contributors in the planning and execution for Ride Ataxia NorCal 2010. They received the 2011 Ride Ataxia SAG Award for their dedication too the advancement of the Ride Ataxia Program.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-bzJskLL/0/L/IMG0718-L.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-bzJskLL/0/L/IMG0718-L.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wally, Mary, Kyle</td></tr>
</tbody></table>The next morning registration opened at 730am with bagels, granola bars, fruit, coffee, juice...anything you need to start the day off right. In the end we registered 40 people the day of the event bringing our total number of registrants to more than 300.<br />
<br />
The 50 mile route and the metric century (actually 68 miles :) started at 8:30 am after a few words reminding the riders why we were making this effort. We reminded each rider to have fun but more importantly to realize that each pedal stroke gets us closer to treatments and a cure.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-qsLvn5P/0/L/IMG0795-L.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-qsLvn5P/0/L/IMG0795-L.jpg" width="320" /></a></div><br />
The 30 milers took off at 9:15 and the 15 milers took off at 10:30. This map shows how all the routes relate to each other:<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkHx17XYAX6COQmTJEl5tbRwFOThJd8f8f9T745ETkPQ-WBEdxJSgYwSlPfeZpWh2ErQRaPVbz1y53mhghpl82HCLBnq_67UF4NGlBcTVr7_XlhoqbE9tKsABHlmvWdb2vSHTA/s1600/2011-05-26_1245.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkHx17XYAX6COQmTJEl5tbRwFOThJd8f8f9T745ETkPQ-WBEdxJSgYwSlPfeZpWh2ErQRaPVbz1y53mhghpl82HCLBnq_67UF4NGlBcTVr7_XlhoqbE9tKsABHlmvWdb2vSHTA/s400/2011-05-26_1245.png" width="305" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div>As you can see, the 30 (red), the 50 (blue), and the 100k (Black; actually 68 miles) all overlap at the rest stop in Winters. This stop was killer! Lots of food and lots of friends as all the routes cycled through that point. You could ride the 30 miler and see a friend who was on the 100k, it was a lot of fun!<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://a8.sphotos.ak.fbcdn.net/hphotos-ak-snc6/227303_222335981126462_156998930993501_916825_7097178_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="http://a8.sphotos.ak.fbcdn.net/hphotos-ak-snc6/227303_222335981126462_156998930993501_916825_7097178_n.jpg" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-9hGKpgt/0/L/IMG6307-L.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-9hGKpgt/0/L/IMG6307-L.jpg" width="320" /></a></div><br />
</div><div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-hMNsk2B/0/L/IMG6366-L.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-hMNsk2B/0/L/IMG6366-L.jpg" width="320" /></a></div><br />
</div><div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-dD62wCJ/0/L/IMG6310-L.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-dD62wCJ/0/L/IMG6310-L.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: left;"></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Our riders were well taken care of at this rest stop and at the three others throughout the routes. There was more than enough food thanks to one person and his many friends and business partners. Greg Mazeres works for UCDavis Dining Services and he rallied all his vendors to support the cause with in-kind donations for our rest stops. This ride is frequently referred to as Ride A-Snacks-ia because of the huge spread that Greg provides. Most participants consumed more calories than they burned because the food was so tasty and plentiful. Thank you Greg!</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Our rest stop sponsors included: <span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; font-family: arial, sans-serif; font-size: 15px;"><a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVbPQuPZA7mog2z_3923JHuljGmbQN-ByT2gLxzpdfli5M=" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">UCDavis Dining Services</a>, <a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVb-PI67qJ0GT2-Sr9vGoXhJiXC8jTilFg9" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">Sysco</a>, <a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVb-PI67qJ0GT11SVN4cdhO-2LA8bBXfTa1De9Ye0I8g6tW-SIEL3eqZsNAfCC2ND5z" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">Coca-Cola</a>, <a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVb-PI67qJ0GT2AXKVn5LXvkvkEfDZDPqqQjmDQg0qxqBE=" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">Dawn Food Products</a>, <a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVb-PI67qJ0GT2AGSkCKnpzsh1hQDob6KtcC6DrAxj8QptdP9p3atA7JQ==" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">Naked Juice</a>, <a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVb-PI67qJ0GT2vqQmxnDrDlbD6P7LQaeBbVyg1YnHiQ-k=" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">Fresh Point</a>, <a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVb-PI67qJ0GT2vxBoJyK56gyaOGuAQzF7m07gr7txosPNL_XAgUQdUeVExDT4m9KIu" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">Gatorade</a>, <a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVb-PI67qJ0GT0xiU8k4l2q3eQFmOCLdLxlKyJ5IXS4040=" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">Kellogg's</a>, <a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVb-PI67qJ0GT2F2I8JI2cO3CphEeKUiWG_JhI9vu9qYvU=" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">Clif Bar</a>, <a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVb-PI67qJ0GT19tZqiRSB2lc-L32uStkx2tgNtKUdumaUUU_plP4LTNGZ8806s2ZPyxx7_kTQa4WtSG__j4qEeUSHPnQhe-94o" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">Maxwell House</a>, <a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVb-PI67qJ0GT3_DwdaXYCmAH8MBUv5WUejUs71fJnkNCaDr-DWELpsAjWVdLlEy_ra" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">Kraft Foods</a>, <a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVb-PI67qJ0GT0w3BYRmAwmzXVKF5sWLUST6Y2Vv2Zp2Wo=" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">Planters</a>, <a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVb-PI67qJ0GT0BIMe6AYs2NqgBY_OAECwA4bVIPkbZKiU=" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">Michael Foods</a>, <a href="http://r20.rs6.net/tn.jsp?llr=byd6asbab&et=1105386593497&s=0&e=001QXuW2zcG5Ncp6zCwmIXO626L1Kz7CiN5NMp7KLhtP9yvRfDXme3E5y1Q5aKK5hVb-PI67qJ0GT112_pG-0_1YN4gcnPpPtmC" shape="rect" style="color: blue; text-decoration: underline;" target="_blank">Heinz</a>.</span></div><br />
<div class="separator" style="clear: both; text-align: center;"><br />
</div>One of our special guests who came out to ride with us was Dr. Gino Cortopassi from UC Davis. Gino received a <a href="http://rideataxia.org/research.php">grant funded by Ride Ataxia</a> in 2009 for his work on "Screening For Multifunctional Friedreich's Ataxia Therapeutics". This project has produced some very positive results and is contributing to pushing treatments forward. Dr. Cortopassi just got back from the 4th International Friedreich's Ataxia Scientific Conference in Strasbourg, France but jet lag was not going to keep him off his bike that day. Gino is a strong part of our FA community. <br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-tnRd8Rt/0/L/IMG6356-L.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-tnRd8Rt/0/L/IMG6356-L.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div>Also pushing the effort that day was a huge showing of volunteers. Our volunteers included members of the <a href="http://iotaphi.org/">Iota Phi Chapter of Alpha Phi Omega</a> from UC Davis who provided assistance to riders at tricky turns and helped us out with registration.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-L3bDf4R/0/L/IMG6213-L.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-L3bDf4R/0/L/IMG6213-L.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div>We also had lots of volunteers at each rest stop serving food and making sure the riders got everything they needed to keep riding for research!<br />
<br />
Our Sag crew consisted of 3 bike mechanics (two mobile and one stationary at the winters stop) and 7 roving cars plus one motorcycle. There was assistance close by the entire time if any of the riders ever got in trouble. The mechanics fixed many flats and repaired several bikes and the rovers gave a few rides to riders who needed it.<br />
<br />
Leading our SAG effort was <a href="http://www.ultracycling.com/about/hof_mitchell.html">Lee Mitchell</a> in his famous red Bike Van. Lee is a legend in the Ultracycling world. We met Lee when we were preparing for <a href="http://raceacrossamerica.org/">Race Across America</a> and Lee has been a great friend ever since. Lee has been providing SAG for an event in the Bay Area for 10 years and it happened to be on the same day as NorCal this year. Lee decided to use his expertise for FARA that day and for that we are ever grateful:<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.ultracycling.com/images/mitchell_bikevan.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://www.ultracycling.com/images/mitchell_bikevan.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo courtesy of Ultracycling Hall of Fame</td></tr>
</tbody></table>Our mobile mechanics included <a href="http://madcatbikes.com/">Mad Cat Bicycles</a>:</div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-McgRm7W/0/M/IMG6221-M.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-McgRm7W/0/M/IMG6221-M.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div>And <a href="http://www.facebook.com/BicycleMedic916?sk=wall">The Bicycle Medic</a>:</div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-xS9SLVZ/0/M/IMG6248-M.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-xS9SLVZ/0/M/IMG6248-M.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div>Here are some of our riders in action:</div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-5cbrLxD/0/M/IMG0807-M.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-5cbrLxD/0/M/IMG0807-M.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-R6bgP2L/0/M/IMG0851-M.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-R6bgP2L/0/M/IMG0851-M.jpg" width="213" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-QXpqLrz/0/M/IMG0913-M.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-QXpqLrz/0/M/IMG0913-M.jpg" width="213" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-GMj5NV7/0/M/IMG1049-M.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-GMj5NV7/0/M/IMG1049-M.jpg" width="213" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-CvbKw4g/0/M/IMG1598-M.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-CvbKw4g/0/M/IMG1598-M.jpg" width="213" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.slotography.com/Ride-Ataxia/NorCal11/i-ZbMLr9M/0/M/IMG1218-M.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://www.slotography.com/Ride-Ataxia/NorCal11/i-ZbMLr9M/0/M/IMG1218-M.jpg" width="213" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: left;">After the ride we enjoyed an incredible meal of ribs with all the fixin's from our partners at <a href="http://outback.com/">Outback Steakhouse</a>.</div><div class="separator" style="clear: both; text-align: center;"><a href="http://a8.sphotos.ak.fbcdn.net/hphotos-ak-snc6/198089_210548692305191_156998930993501_818267_2426659_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="http://a8.sphotos.ak.fbcdn.net/hphotos-ak-snc6/198089_210548692305191_156998930993501_818267_2426659_n.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: left;">Plus a short talk about research and the role of fundraising in the process of curing this disease. With comments from one of the brilliant people who is actually performing the research, Dr. Gino Cortopassi.</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">Ride Ataxia Nor Cal is not only part of the national Ride Ataxia movement to fund research in search of treatments and a cure for FA, Nor Cal is the home of this effort. So many in the Nor Cal community have supported Ride Ataxia since our very first ride in 2007 and have ridden with us repeatedly in subsequent rides. People throughout California, and from Washington, and Montana. Thank you all for being the force behind this movement- for coming out year after year, for growing the event to your family and friends, and for fundraising with a big heart. Each of you have made an impact in my life and are postively affecting the lives of thousands of families with FA. Can't wait to see you and ride with you next year!</div>kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com0tag:blogger.com,1999:blog-31287133.post-83138240508194638602011-05-02T10:30:00.000-07:002011-05-02T10:30:06.770-07:00Discounts for NorCal riders!<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="http://kensbikeski.com/merchant/371/images/site/kens1banner.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="86" src="http://kensbikeski.com/merchant/371/images/site/kens1banner.jpg" width="320" /></a></div><br />
Attention NorCal riders! Looking for equipment deals in preparation for the ride on May 14? For the entire week leading up to the ride, <a href="http://kensbikeski.com/">Ken's Bike and Ski</a> will be offering our riders 15% off their lowest posted price on any cycling accessories, and 5% off their lowest posted price on any bike. <br />
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Check them out any time that week or we'll see you there for packet pickup May 13 from 4pm - 530pm!<br />
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To find out more about Ride Ataxia NorCal or to sign up or donate please visit the <a href="http://rideataxia.org/norcal">Ride Ataxia NorCal event website</a>.kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com2tag:blogger.com,1999:blog-31287133.post-68220450154427136202011-04-29T10:11:00.000-07:002011-04-29T10:30:16.585-07:00Jerseys To Honor Phillip<div class="separator" style="clear: both; text-align: center;"></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;">Our jersey designer, Larry Phillips (Superlario) read the <a href="http://rideataxia.blogspot.com/2011/04/ride-ataxia-norcal-dedicated-to-memory.html">previous blog post</a> just as the NorCal jerseys were being finished with printing. He called me and told me that he was going to send the fabric for the collars back through the printer before they were assembled so they could print a memorial to Phillip on the inside Collar of each 2011 NorCal jersey. I can't wait to get mine!</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: left;">Here is the final design with the Phillip Bennett Memorial which will appear on the inside collar of the jersey.</div><div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizdpLOeQsfVdbLmJOHSHLJgqJRmHai1zXuMNVKD4JPTUSD8TPTUQlS-GE5EOys_oW926ohI5ZEowKaY447bgPIvM-UxeyiCh8PGgpyEKFNaAYbJUPg9U4CgTfcMTWkKi99cNY6/s1600/NORCAL+BLOG+Jersey.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="157" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizdpLOeQsfVdbLmJOHSHLJgqJRmHai1zXuMNVKD4JPTUSD8TPTUQlS-GE5EOys_oW926ohI5ZEowKaY447bgPIvM-UxeyiCh8PGgpyEKFNaAYbJUPg9U4CgTfcMTWkKi99cNY6/s320/NORCAL+BLOG+Jersey.png" width="320" /></a></div>Thank you to our Jersey Sponsors: <a href="http://www.brownandcaldwell.com/">Brown and Caldwell</a> and <a href="http://edisonpharma.com/Home.aspx">Edison Pharmaceuticals</a>.<br />
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Each participant who fundraises $500 or more will receive a jersey either in your goodie bag (available the day before the ride) or to be shipped after the ride (for those fundraisers who may not have met the jersey deadline).<br />
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To find out more about the ride in Davis, CA please visit the <a href="http://rideataxia.org/norcal">Ride Ataxia NorCal Website</a>.kyle@rideataxia.orghttp://www.blogger.com/profile/12968115616691848045noreply@blogger.com0