Friedreich's Ataxia hasn't presented physical manifestations in my body, but the repercussions of FA have rippled across my life in ways that have changed the lives of many generations to come. Over the course of my life I have watched this disease twist it's unending fist around two of my dear brother's bodies. As a young child I remember running amok with Ryan, who is two and a half years my senior, around our neighborhood with the numerous other children that lived near us. I have seen videos and have my own memories of him biking, running, laughing, exploring and enjoying his childhood. Owen, who was born four years after I was – lived a similar childhood as Ryan did, and even had his own younger sibling to torment and explore with. Trevor was born three years after Owen was, and nine years after Ryan. It was at this time that the gravity and seriousness of the disease became apparent.
During my adolescence I was unaware that I could, at any moment, begin showing symptoms; I was naively oblivious to this fact, and until about a year ago was under the impression that I wasn't 'spared' from the two recessive genes that plague my brothers genotypes, but that it simply had never been in the realm of possibilities for me. I don't know when I finally comprehended the shocking probabilities that accompany FA – but somewhere along the line it hit that I had been given a 25% chance of inheriting FA and a 25% chance of not inheriting any of my parents recessive genes. I was tested when I was 17, my blood came back negative for both of the genes connected to FA.
A chain of events over the past two years of my life have resulted in my desire to join Team FARA. My mom, Lisa, had been toying with the idea of a fundraiser for awhile, but we needed something that required less involvement than organizing a new local event. Team FARA was exactly what we were searching for – the ability to simply create a donation webpage, ask your friends and family to donate or share, and compete in your choice of endurance event! It was exactly what we were looking for; I set up Team Ryan and Owen Jones, wrote a letter to our supporters, and started asking for donations!
I had already decided to compete in the Annual Swim Around Key West which is a 12.5 mile open water swim around Key West, Florida. What I didn't plan on was it becoming a successful FARA fundraiser and to gain as many supporters and followers from my hometown of Juneau, Alaska. I realized that many of our friends and family wanted to help us, but had no direction or knowledge of how to do it. Once I started asking for donations or help sharing the word about our Team FARA event, the money started rolling in. I had set my original goal at $1,000; by the time of the actual event (June 8th, 2013) Team Ryan and Owen Jones had raised $5,000! One of my friends from the swimming community decided to compete in the Key West Swim with me, Cody Brunette. He helped to make this event successful by not only winning the entire event, but giving the spotlight to Team FARA. This helped to spread awareness in a whole new part of the country, basically the best possible outcome for our efforts!
I would like to continue to raise money for FARA through the open water swims I am planning to do this summer, but I need new ideas. I think I have about tapped out my friends bank accounts in the Juneau area, so I was thinking a new personal goal would be to recruit new team members. We all need to be able to use our own personal influence to inspire others to pitch in and help out as well. The amazing thing about this is that it not only helps out an incredible organization that is working towards a cure for FA, but it also helps out your own soul.
Helping others, doing something selfless or leading others to do the same is a cure for our own personal diseases. It literally does a body good to help someone besides yourself. It's an important lesson, and an easy cure for something you didn't even know you had. When was the last time you experienced pure joy? For me it was Saturday June 8 on the beach in Key West, Florida. I was exhausted, sick, salty, and sore, but as I walked out of the water after swimming for over five hours in the wavy Atlantic/Gulf waters, I only needed one glimpse of Ryan waiting for me on the beach to feel a rush of happiness – it was the best moment of my life. These moments are there for everyone – it's up to you to make a difference in your own life, as well as thousands of others that need your help. I am proud to be part of Team FARA. I have many more swims and many more joyous moments to live for, and I have Team FARA to thank for them.
By: Kristin Jones