We are pleased to introduce you to Kyle Bryant, the National Spokesperson for the Friedreich’s Ataxia Research Alliance (FARA) – a nonprofit organization dedicated to funding and facilitating research leading to treatments and a cure for Friedreich’s ataxia (FA) . We met Kyle a few months ago. He told us about his own battle with FA and his passion to find a cure. FA is a genetic, debilitating, life-shortening neuromuscular disease that robs individuals of the ability to walk, talk, see, and hear, often times including life-shortening heart disease.
When we had lunch together, Kyle told us all about Team FARA, a nationwide movement of people who are walking, running, biking, and swimming to raise funds for FARA.
In 2010 Kyle and his friends Sean Baumstark, John Lockwood, and Mike Mellott (accompanied by 13 crew members) competed as Team FARA in “the world’s toughest bike race”, Race Across America (RAAM) – a non-stop 3000 mile race from West Coast to East Coast. Teams must finish in less than 9 days. We are amazed by Kyle and his teammates’ perseverance, and we are inspired to find a way to help. So we offered to help Kyle share his story. But he tells is much better than we ever could. So we let him.
By Kyle Bryant
Sitting in my trike in the pouring rain in the middle of nowhere – I had that thought again “I can’t believe we’re actually doing this.” I had that thought quite a few times in the previous 2500 miles through the afternoon heat of the desert or the freezing cold morning descent in the Rockies, but now I was soaking wet, in God knows where, in the dark, about to ride like my life depends on it – because it does.
At the previous time station, we came across a race official who advised us to hang out and let the storm pass, but we were racing the clock - a little rain was not going to keep us from the finish line.
As the lightning struck, briefly turning night into day, John approached at 20 mph hollering “Let’s go Kyle! Get it done buddy! Keep pushing! Go Team FARA!” It was incredible that he could keep his enthusiasm and energy up after we had been running on adrenalin for 6 straight days already. John rolled up behind me with a high five to signal a successful transfer and instantly I started riding as hard as I could.
When each pull is 6-8 miles, there is no need to pace yourself because you will recover during your teammate’s next pull. I quickly reached top speed which was probably 17-18mph due to the insane downpour.
Rooster tails sprayed from all three of my tires on my forearms and down the back of my jacket. I soon found that there was no need for rain gear considering the constant stream down my back coupled with sweat. I was soaked to the bones within minutes.
After a couple miles, the water started building up on the road getting deeper and deeper in the right hand lane. I was forced to ride in the left hand lane (the wrong way) for about a quarter mile because of the small lake in the road.
When I finally hit my stride, and I was cruising at a comfortable 17 mph, I was able to block out the driving rain and get inside my own head for a few minutes. I thought “why are we doing this?” And I remembered the email I got 2 weeks prior to the race which said
I wanted you to know that my 12 year old daughter Natalie was diagnosed 1 month ago today with FA. This has been the hardest month of my life. I look online and can’t find much hope. But every time I watch you in an interview, you bring me such HOPE and I want to thank you for always making this mother feel like a cure is possible before it’s too late for my sweet baby. And please tell your father that what I have seen of him, he is an AMAZING example of a dad.”
Instantly my speed increased.
Two days later in the pitch dark, at 1:15 am on June 20, 2010 our 4 man Team FARA rolled across the finish line. We finished RAAM in 8 days, 8 hours, and 14 minutes. We were first in our division and 14 hours ahead of the cutoff time. Against all odds. Heat with no AC (due to a broken RV generator), cold, rain, nasty climbs, steep descents, not to mention the fact that two of the four of us have FA – the energy deprivation disease that is supposed to keep us from doing things like this. However, none of that mattered when we thought of the thousands of FAmilies who are battling this disease every day with no treatment or cure.
You have the opportunity to join Kyle, FARA, and Victory in the fight against FA during the 4th annual Ride Ataxia Philadelphia in Limerick, PA on October 7, 2012. Ride Ataxia has something for the whole family with routes from 1 to 50 miles. The Ride will have strong SAG support, fully stocked rest stops and post-ride food from Outback Steakhouse, Carrabba’s Italian Grill, and Bonefish Grill. Visit rideataxia.org/philly for details and to register. Use coupon code Victory2012 to save $10 if you register by July 5.
With Ride Ataxia as part of the fuel for the research, FARA is on the fast track to a treatment and a cure. FARA understands, in detail, the cause of FA and is supporting the development of several treatment approaches. We know some of these approaches will fail, that’s just the way it goes in drug development. But some of these shots will find the back of the net. The successful shots will likely be developed into a “cocktail” treatment therapy for FA. You are invited to the cocktail party when that time comes, we will be serving Victory.
See you on October 7!