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.