October 30, 2008, will be one of those dates forever etched in my memory because on that date the promises my husband and I made to grow old together were suddenly replaced by the reality that time isn’t promised to anyone, especially when that person you planned a future with is diagnosed with Friedreich’s Ataxia (FA).

Friedreich’s Ataxia, two obscure words that quickly became all too familiar as I studied the internet for weeks trying to learn as much as I could about this disease. Besides finding out there is no cure, I quickly learned FA has a devastating pathology matched with a very bleak prognosis. Jumping down that rabbit hole left me heartbroken and feeling like a dark shadow now hovered over our lives, growing bigger every day and leaving only grief and pain in its wake. There was no way to have known how this disease would impact our lives, how it would challenge and test us, and how it would become the catalyst to why you are reading this article today.

When we first received the diagnosis, once I recovered from that punch to the gut, I found myself forming that inevitable question, why? Why did this happen to him? Why did this happen to us? Why does something so horrible have to happen to someone so decent, someone who doesn’t deserve this insufferable future? I needed an answer, even though deep down I knew there was no way of knowing the answer to that question. A single thought came to me, and it was the only thing that helped me wrap my head around why some people are handed harder challenges in life than others. The really tough moments go to those who can handle it. The people who are made up of the qualities that can be tested by adversity and come out of it by teaching us all how to shine in the darkness. It happens to only the brave.

Those three little words, “only the brave” became the mantra that ignited another idea to take this disease out of obscurity and push for more research, turn compassion into action and inspire community support so no one feels alone in their journey with FA. In my mind, creating something that could be shared to a massive audience to amplify awareness of this disease was what led to turning my poem into a song. If my words could become a song, and if the song could become a video, then we could reach a countless number of people and then maybe, just maybe the ripple effect would create a motivation for action that could eventually impact everyone living with this diagnosis.

Through an amazing collaboration with Jason Crowley, Jody Raffoul, Jeff Burrows and the rest of the Saints band, my words were put to music, and a recording of Only the Brave was completed. Then friends who have become more like family initiated the first round of fundraising to make my vision a reality and push the song into a music video. Anthony Fanara from Splat Productions was the Director/Producer who helped execute this part of my mission.

As I type this entry, the video is going through the editing process and will be revealed on the night of our first fundraiser. The fundraiser is happening because a group of people who love and respect Greg wanted to shed that feeling of helplessness and do something to help make a difference. It is because of this that Friedreich’s Fighters was born.

Looking back, I realize that none of this -the push to raise awareness, the drive to build something meaningful, the creation of an organization to support others would probably never have happened if my husband wasn’t diagnosed with Friedreich’s Ataxia. I definitely wouldn’t have understood the urgency, the need, or the power of community that now drives this entire project. What began as heartbreak turned into purpose and I think the lesson here could be that even though you can’t always choose what happens to you, you can always choose what you do with it. Pain strips life down to what really matters, and in that space of loss or uncertainty, you just may discover a strength you never knew existed. If you are that person who finds the strength to keep going when life gives you every reason to stop, then your story is the very meaning of ‘Only the Brave’.    – Kim Seguin

“As one person I cannot change the world, but I can change the world of one person.” – Paul Shane Spear