One of the first things someone with Friedreich’s ataxia notices when they start to show symptoms is trouble walking, or difficulty with coordination and balance.Heather Bonacorda, mother to Blake, 21, and Sophia, 20, noticed this with both her children. Blake, who used to be a competitive gymnast, suddenly “couldn’t walk across the room without holding onto the furniture,” Heather said. Blake was diagnosed in November 2016. That December, Sophia also was diagnosed, but she said first noticed symptoms at age 12. Bonacorda, her husband and Sophia will participate for the first time in the Ride to Cure FA, or RideATAXIA, on Sunday. They will be in a team of 12 and tackling the 12-mile bike route. At first, their goal for fundraising was $1,000, but they have raised nearly $26,000 for the Friedreich’s Ataxia Research Alliance and expect to raise more money by the day of the event. Read more HERE.
rideATAXIA’s First International Adventure
"The strength of the team is each individual member. The strength of each member is the team." --Phil Jackson
ON JULY 1-8, 2017, 21 riders from the United States and 30 riders from France will come together for a 350 mile ride from Strasbourg France to Lentilly, France (a suburb of Lyon, France) in rideATAXIA’s first venture overseas – rideATAXIA Europe, Le Peloton de l’Espoir (The Peloton of Hope). The event will also include a single day ride with multiple route lengths in Lentilly.
rideATAXIA started with long-distance multi-day rides in ’07, ’08, and ’09. However, for the past 7 years, the rideATAXIA program has consisted of single day rides in locations across the US with multiple route lengths. The goal has been to involve as many people as possible; uniting people with FA and able bodied cyclists in a healthy and active way to advance research through fundraising. “I’m excited to do another multi-day ride. The bond built between teammates that forms during events is pretty incredible.” says Kyle Bryant, founder and Director of rideATAXIA for FARA.
rideATAXIA Europe- Le Peloton de L’Espoir aims to unite the patient community in an empowering physical activity, draw attention to opportunities to be involved in clinical research through registration in the Global FA Patient Registry and raise funds for an Association Francaise Ataxia de Fredreich (AFAF) and FARA collaborative research grant. Le Peloton de l’Espoir will also strive to spread FA awareness in France and beyond.
The idea for Le Peloton de l’Espoir started several years ago as a conversation between Kyle and French FA researcher Dr. Helene Puccio. They saw the opportunity to unite two strong FA communities in an effort to raise awareness and funds for research. This idea started to come to life when Dr. Puccio recruited her husband, Benjamin, colleague Francois Piguet and an FA parent, Anabella Saraiva to the team. Benjamin has spent countless hours organizing all the logistics for the ride between Strasbourg and Lentilly- the route, the lodging, the rental bikes. Francois has organized many of the activities for the starting event at IGBMC as well as promotion of the event and creative ways to teach youth and the public about Le Peloton and FA. Anabella, a tireless advocate for the FA community, is the ride director for all aspects of the community ride in Lentilly.
Not unlike our everyday team, in pursuit of treatments and a cure for FA, Le Peloton de l’Espoir is comprised of people with FA, their family, our friends and even some FA researchers. We’d like to introduce you to some of the American riders (posted below). In these posts, they share a little about themselves and their motivation for riding. We look forward to meeting our French teammates upon our arrival in France, and we plan to introduce you to some of them via the rideATAXIA Facebook page. Please be sure to follow our journey there. Everyone brings a unique strength and skill set to the team- qualities that we will rely on when the days are hot, or the climb is steep, or the path before us isn't quite clear. With several unknowns before us- the language, the weather, the terrain, this journey will be an adventure- one made richer by the people at our sides.
Meet some of the US Team:
My feet were clipped securely into the pedals and my helmet was snug on my head. Friends and family in attendance flanked me in our army green tees.
“The Fellowship of the Ride” was my team name, displayed in gold on the front of our shirts. On the back was a J.R.R. Tolkien quote from the first book in The Lord of the Rings trilogy, “Faithless is he that says farewell when the road darkens.”
The rideATAXIA in Dallas on April 1 was the first event I attended within the FA community. Bearing a rare disorder such as Friedreich’s ataxia tends to be isolating. As physical limitations gradually increase over time, we sufferers are left feeling alone. “No one understands me,” I think, more times than I should.
Having melodramatic thoughts like this may not be common among all people with FA, but it sometimes is for me.
I think that the greatness of this event in Dallas lies not in the ride itself, though riding my recumbent trike for three miles was indeed a huge and fulfilling accomplishment; I hadn’t used my legs much in over a decade until I purchased my trike a year ago. Honing your abilities in a world of disability is unspeakably rewarding.
rideATAXIA began in 2007 with 2 people on bikes (trike for me) and a goal to raise $30,000. We had no idea how we were going to get there. However, our family and friends answered the call and that year we raised over $40,000!
Now the circle of friends and FAmily has expanded with 6 rides across the US and over 2,000 participants annually. It's no longer just my family, there are over 100 FA families involved in the ride. We are all in this together. YOU helped the FA community raise over $1M for FARA through the rideATAXIA program this year. Thank you.
The 6th Annual rideATAXIA Orlando was again held at Waterfront Park in Clermont, Florida on Sunday, November 13, 2016. The weather was absolutely perfect for the 325 riders! The morning was cool (for Florida) and sunny. The combination of all the team’s efforts raised more than $100,000!!!
On a personal level, it was extremely fun being a part of the fund-raising effort and having a great time doing so with everyone at the park that day. My team was very small, but I surpassed my fundraising goal. My small team consisted of my sister, her 12-year-old twins, and Kyle Bryant. You may have heard of that last guy. ;) My sister and one of her kids even road a tandem bike, which I think is pretty cool. My sister and her kids had such a good time that they already committed to doing the ride next year. Be on the lookout for my team in the future, the FAntastic Voyagers.