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 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.

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.

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).