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