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!