My first exposure to ataxia began around age 10 when my father began showing the symptoms associated with ataxia. I grew up seeing the toll the disease had on him and my entire family. It took several years until there was an official diagnosis of his disease, one we learned was genetic.
My chances of having the disease were 50/50. I’m a planner, so in 1994 when the first gene associated with genetic ataxia was found, I was one of the first tested. It was the summer before I began medical school, I was 21 and I was diagnosed with Spinocerebellar Ataxia Type 1 (SCA1).
So I began making plans. I graduated from medical school and choose to work in radiology. I happen to love my field, but I also chose it knowing it would allow me to work longer despite the disease. Other hard choices were made and I chose to not knowingly pass on the disease to another generation.
I live a full and meaningful life – it’s the way I’m wired. So when my symptoms began appearing a few years ago, I decided to take ataxia by the horns. In 2015 we had an appointment with Dr. Bushara at the University of Minnesota in Minneapolis. During the appointment we met and fell in love with Char Martins. During our conversation she told us about the National Ataxia Foundation’s Annual Conference and Char told us we should attend.
At first we were reluctant but we decided to go anyway. When we arrived we knew we’d made the right choice. During the conference we met so many wonderful people and were able to share our story and hear the amazing stories of others. We were no longer alone in our struggle with ataxia. We had a family to help us. After arriving back home in Nebraska we got to thinking about how there must be more people out there that felt the isolation we had. Without anyone to turn to for help, advice, or just an ear to listen, struggling with ataxia can become unbearable. We knew we had to do something about it. We decided to create a support group but we soon realized that a support group wasn’t all that was needed. We wanted to create a community with the financial means to help others. Living with ataxia comes with a multitude of expenses most people don’t have to deal with. This financial burden puts a huge strain on families dealing with ataxia. Thus, Nebraska Ataxia, an IRS approved 501(c)(3) nonprofit organization, was founded.