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