Friedreich’s ataxia has been a part of my life as far back as I can remember. My two older sisters have FA, and my family has long been fundraising for research and awareness of the disease. After years of hosting large fundraising events, my family took a break just as Team FARA was organized. It was a great opportunity for me and my now husband, Kyle, to start running races for FARA. The simplicity of the sign-up process makes it trouble-free for members to join your team, and by distributing the team website link, donations from family, friends, and colleagues are quick and easy to complete online.
The AthHalf in Athens, Georgia on October 20th was our third race as part of Team FARA. With four other team members, we raised over $7,000, our highest amount yet. My family hopes to make the AthHalf for Team FARA an annual event. On Saturday, we enjoyed an afternoon of football followed by a pasta dinner. Then after the race on Sunday we all met at the finish line and stuffed ourselves with a huge brunch afterwards. In addition to raising money, food is also a good incentive to run!
I didn’t grow up a runner, but my husband did and encouraged me to start running races with him years ago. Now having the opportunity to run a race for my sisters with close friends and Kyle by my side just makes it a perfect scenario. As if that isn’t enough, our team FARA shirts sealed the deal. I ran with a sense of pride and smiled as runners asked along the course asked, “What is FA?”. Thankfully Kyle handled the answers since running 13 miles and multitasking don’t mix for me. :)
By: Katie Kilch
I first became aware of FA earlier this year when I was introduced to Bridget Downing. When I met Bridget, while it was clear she had a leg condition, we didn't discuss the specifics. When I later learned she has FA, I found the FARA website and educated myself on the disorder. The more I learned, the more amazed I was at Bridget's independence and positivity, which seems to be a theme among FA patients. She truly does not let FA define her, and it really made me consider if I would be as strong, faced with the same reality.
I have been running since I was a freshman in high school, and in 2006 I ran my first ultra-marathon. An ultra-marathon is technically any running distance beyond 26.2 miles, but they are most commonly between 50k (31 miles) and 100 miles. About the time I met Bridget, I was contemplating running my first 100-mile race. Up to that point, I had run two 50-milers and one 40-mile race, but 100 miles seemed daunting and frankly, I was scared of the training commitment and risk of failure. I had already decided that if I took on a race that substantial, I wanted to make it bigger than just a bucket list check-off. It seemed as though it was fate that I met Bridget and became introduced to FARA at this time. Joining Team FARA to help fundraising and awareness for FA was a clear and easy choice.
Marilyn (Bridget's mother) and Jamie at FARA headquarters were extremely helpful in providing guidance for my fundraising event, held 2 weeks before the race. We had a turnout of around 75 people and raised over $2200 at the party alone. Marilyn was in town at the time and able to attend; it was so powerful to have her and Bridget speak at the event. I know I was moved by several who came up to me and were grateful that they had learned about such a worthwhile cause. Many felt as I do; that the current stage of research and testing is extremely exciting and it will be awesome having made some small contribution towards the cure.
The race began October 5th in West Yellowstone, MT. There were about 38 runners participating in the 100-miler, and it was a frigid 16 deg F at the 6am start. I had a phenomenal crew of 4 friends that were there to provide me food, fluids, and minor medical needs. At mile 50, I could have one person run behind me to keep me company for the second half (called a pacer) and 3 of the 4 rotated duties in roughly 5-mile increments
|My Awesome Crew: Jen, Klaus, Kevin and Lauren|
I was fortunate to have no injuries and I felt really good upon starting the race. The first 30 miles went down easily, as the views were just spectacular. Shortly after that, I think the effect of the cold on my muscles became noticeable, as I had a lot of aching in my legs. That gradually improved over the next 15 miles. Once I got my pacers at mile 50, I cruised on our conversations for 15 'easy' miles. As we started entering some hills in Idaho, I began to walk many of the uphill sections, which is a good way to conserve energy. Close to mile 70, I was passed by Pam Reed, who is an ultra-running legend (she's run 300 miles without sleep, and holds many records!). I definitely started to tire as the sun set and we suited up with night gear, but my pacers kept me company and I ran a lot more than I had originally thought I would. When I hit 'low' points, I thought about Bridget, her family, and all of the FA families I had read about, which was strong motivation. I crossed the line with the Team FARA banner before 2am, October 6th, with a total time of 19 hours, 49 minutes, and in 7th place overall. The race was awesome, and definitely an achievement, but becoming a part of the FARA family has truly been more rewarding!