A Guide to Beginning Your Search For Adaptive Cycling Equipment

**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.**

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."

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:

Would it be better to use a trike:

Or a handcycle:

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.

Handcycles
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 disabledsportsusa.org 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.

Trikes
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.

Here is a step by step guide about shopping for a Catrike (aspects of this process apply to trikes in general):

1. Check out Catrike.com 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. 
2. 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. 
3. 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.
4. 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. 
5. 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.
   
   
   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.
   
   
   
   Whatever you do, consider this factor so you can avoid disappointment when you take your first ride.
6. 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! 
7. Go for a ride! Test a few models. Consider all the factors and have fun choosing your new machine.

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 KMX.  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.

Cost

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.  

• 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 rideataxia.org/aai for more info and the application when it opens.
• The Challenged Athlete's Foundation has a program called Access For Athletes 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: CAF Access For Athletes.    
• 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: imablefoundation.org/equipment-grants/.  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.

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.

Ride Ataxia Philly Promo Videos

We are incredibly grateful to our Media Partner, PHL 17 for an outstanding job on three promo videos leading up to the Philly ride. Check them out. Thank you Jennifer Lewis-Hall and team!

Ride Ataxia funded research. MRI biomarker study at UMN

Each 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.

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.

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.

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.

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).

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.

Dr. Lenglet's TEDx Talk:

These images are not the only thing that comes out of this study.  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.  This study takes a look at people with FA and compares their MRI’s to age matched controls who do not have FA.  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.  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.

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.  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.  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.  I am going to pick a different Pandora station next time, Jack Johnson was putting me to sleep.  Perhaps I need to go with some punk rock from my highschool/college years.

In the end Dr. Jim Joers and Dr. Pierre-Gilles Henry said they got the data they needed and it looked good.  After the data is collected, Dr. Henry applies his expertise to analyze the spectroscopy data.

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).

From Dr Henry: "MRS is really a unique technique that allow us to study the neurochemistry and metabolism of the nervous system non-invasively.

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."

Top left: Dr. Jim Joers. Top right: Dr. Pierre-Gilles Henry. Bottom left: Dr. Christophe Lenglet. Not pictured: Diane Hutter.

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.

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.

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.

See you on the road!

2014 Ataxian Athlete Initiative Recipients

The Friedreich’s Ataxia Research Alliance (FARA), in partnership with The FA Project, Catrike, The Melting Pot, and The Texas Irish Foundation 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.

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.

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.

Read about the impact of adaptive equipment from this year's grant recipients:

Liam

“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.

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.”

Carl

"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.  

I went to my first "ride Philly" this year and raised over $1000. It was amazing! I plan on attending every year.

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."

Abby

"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. 

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!"

Chase

"'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."

Amanda

"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."

Mary

"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!

It is all about diet, exercise, attitude, and Ataxia Awareness."

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.

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.

The Rupeleton Rides Strong Again

“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”

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.

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.

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.

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.

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.

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: rideataxia.org/norcal.

“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.”

“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.

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.

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.”

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.”

NorCal 2014 dedicated to Lee Mitchell

Sometimes it takes someone who has traveled the road before you to show you the way.

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."

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.

Lee 'Fuzzy' Mitchell

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. 

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.

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.

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, Ride Ataxia NorCal is dedicated to Lee Mitchell.

On the inside collar of every jersey there will be a tribute to Lee:

and on the back of every jersey will be the famous BIKE VAN license plate:

Thank you Lee. Because of you anything is possible.

You Betcha!

Maximizing Our Impact - Ride Ataxia Relocation; Portland to Seattle

In 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.

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.

Registration for Ride Ataxia Seattle is now open and we invite you to check it out at rideataxia.org/seattle, register, and come ride with us as we continue the push toward a treatment and cure for Friedreich's ataxia (FA). 

Ride Ataxia Seattle will take place at the beautiful and spacious Marymoor Park in Redmond, WA.

The ride will feature 4 different routes to span the spectrum of abilities:

• 5 mile route - Beginner. Flat. Samammish River Trail. Map: http://ridewithgps.com/routes/4047684 
• 10 mile route: Beginner. Flat. Samammish River Trail. Map: http://ridewithgps.com/routes/4047674 
• 22 mile route: Intermediate. Some Climbing. Varried Traffic Conditions. Map: http://ridewithgps.com/routes/4047624 
• 53 mile route: Experienced cyclists only. Significant Climbing. Varied Traffic Conditions. Map: http://ridewithgps.com/routes/4047641

All routes will feature beautiful Northwest views, fully stocked rest stops and strong SAG support.

The post-ride festivities will feature delicious food from Outback Steakhouse, and drinks from Coca-Cola, Samuel Adams, and Chateau Ste Michelle.

You can find all the details at rideataxia.org/seattle.  See you there!

Ride Ataxia 2013 Reflection

This article is from The Advocate newsletter.  Read the entire newsletter here:  http://curefa.org/_pdf/FARAnewsletterDec2013.pdf

Young Family’s Involvement Is A Team Effort

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.

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.”

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.

“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.”

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.

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.

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:

• More people with ataxia cycled on adaptive equipment than ever before in the ride program 
• We reached a new fundraising record of more than $220,000 for a single ride in Philadelphia 
• In 2013, the Ride Program raised over $660,000 (gross)! 

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!

For more information, visit rideataxia.org

Ride Ataxia Remembers Garrett Timbie

Ride 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.

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."

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.

Team Timbie at Ride Ataxia Philadelphia 2012

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:

Thank you Garrett and Team Timbie for your steadfast support of Ride Ataxia and FA research. Together We Will Cure FA!

Announcing the 2013 Ataxian Athlete Initiative Grant Recipients

The Friedreich’s Ataxia Research Alliance (FARA), in partnership with The FA Project, Catrike, The Texas Irish Foundation, and UVA Sun Systems 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.

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.

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.

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.

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.

Previous recipients:

Mary Dieteman - Catrike Expedition

Bill Ramsey - Top End Force R

View photos of all previous recipients here: http://rideataxia.org/aai

About FARA
The Friedreich’s Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich’s ataxia. For more information, visit: curefa.org

About Ride Ataxia
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: rideataxia.org

Ataxian Athlete Initiative Now Accepting Applications for 2013 Grant Program

For Immediate Release 

Rare Disease Organization to Provide Adaptive Cycling Equipment to Deserving Applicants 

Downingtown, Penn.,(April 8, 2013) – 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).

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.

Mary on her Top End Excellerator XLT

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.

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:

• Diagnosis – Applicants must have been diagnosed with some form of Ataxia to qualify 
• Applicant’s perceived character, drive, and commitment to an active lifestyle 
• Financial Need 
• Detailed research and knowledge of equipment requested 

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.

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 rideataxia.org/aai for the latest info and registration for the webcast.

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: rideataxia.org/aai.

Patrick on his Catrike Trail

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 The FA Project, Catrike, The Melting Pot, 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.

About FARA: The Friedreich’s Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich’s ataxia. For more information, visit: curefa.org.

About Ride Ataxia: 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.

Rider Profile: Mark

Name: Mark Solow               

Hometown: Tulsa, OK

Current Location: Highland Village, TX

Age: 55 (will be 56 by the ride)

Occupation:  Sales.  (I sell network television time to ministries and humanitarian organizations.)

Club: Pathfinders Fun Cycling  (facebook.com/cyclehighlandvillage)

About you in your own words:  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). 

I love grill and roast my own coffee.  I’m a Gideon and home group leader.

What is your favorite local route?  Campions Trail in Irving or Grapevine lake south side.  It’s a toss-up.

What is your favorite item of cycling gear?  Love my sneaker-style cycling shoes with SPD cleats.  I can walk around in them and still clip in on the bike.

Longest ride?  32 miles.

Cycling goal for 2013?  50 miler at or before Hotter ‘N Hell.

Favorite cycling snack?  Honey waffles.

Junk food Weakness? Taco Bueno bean burrito with extra cheese.

How many Ride Ataxia's for you so far? 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.

What distance will you be riding this year?  25 most likely.  Might try my road bike at 50 though.

Tell us one thing you know about Friedreich's ataxia (FA) without using the internet.  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.

What do you love about the Ride Ataxia?  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!

Rider Profile: Emily

Name: Emily Penn

Hometown:  Dallas, TX

Current Location: Murphy, TX 

Age: 20

Occupation: Student

Club: Cycling Center Dallas

About you in your own words:  I’m a Reese’s peanut butter cup eating, cowboy boot wearing, Eli Young Band listening kinda gal!

How did you get into cycling?

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).

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 Texas IrishBike Club and Richardson Bike Mart 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.

What is your favorite local route?

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.

What is your favorite item of cycling gear?

My FARA jersey of course!

Longest ride?

15 miles

Cycling goal for 2013?

Complete the 50 mile route at the ‘’Hotter Than Hell’ ride in August in Wichita, TX

Favorite cycling snack?

Not gels!

Junk food Weakness? 

It's a toss up between Rice Krispy Treats and the aforementioned Reese's :)

How many times at Ride Ataxia Dallas for you so far?

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!!

What distance will you be riding this year?

I plan to rock 25 miles!

Tell us one thing you know about Friedreich's Ataxia (FA) without using the internet.

It is a progressive, debilitating and life-shortening neuromuscular disease. I have it but it DOES NOT have me!

  

What do you love about Ride Ataxia?

The dream for the future, the freedom it offers, the hope that it fuels and the high-fives along the way.

rideataxia.org

Announcing the 2012 AAI Recipients

We are very excited to announce the recipients of the 2012 Ataxian Athlete Initiative!

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.

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 The FA Project, Catrike, The Melting Pot, 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.

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.

Read and share the Press Release HERE.

Tricia Herman-Maul on her new Catrike

"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-Maul