While Pondering FA and Life, I Remain Hopeful

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by Sean Baumstark |

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I’ve spent the last six weeks planning and thinking about the things that are important to me. Most of my time and mental energy is focused on personal goals, finances, de:terminence (the nonprofit organization I founded), and habits grounded in exercise. I also do a good amount of planning and goal-setting for the podcast I co-host with my long-time friend Kyle Bryant, who also lives with Friedreich’s ataxia (FA).

When I sit back and contemplate these significant areas of my life, I feel like it’s enough to focus on and worry about, both in the short term and the long term. I also must consider that my income requires I work 40 hours or so a week. And I can’t forget family and friends, because such relationships don’t grow by accident. Keeping the big picture in mind is important.

All of this leaves me wondering where and how FA fits into my life. Although FA is all-encompassing, ever-present, and always noticeable in my life, I suppose the long-term effects sometimes escape my thinking about the future. I certainly don’t ignore it or pretend it doesn’t exist — that ship sailed about two days after I was diagnosed. But I am careful not to let it dictate too much of my life when it doesn’t need to.

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Every now and then, I feel challenged with my thought processes; or perhaps more specifically, how I create a distance between FA and me. For example, if I sit at my desk long enough, I can momentarily forget how FA affects my life. But those moments of respite are fleeting. When I need to stand up or realize I forgot something in my car, FA’s effect on me is clear.

Other times, something I’ve read, such as a headline, column, or blog post, reminds me of my disability and the effects of FA. Thankfully, while much of the stuff I read is authentic and sometimes heartbreaking, it usually offers a sense of gratitude and optimism. This is a big reason why I’ve come to appreciate the Friedreich’s Ataxia News family.

In this online community, whether I come across a scientific article or a column or forums post about someone’s personal experience, I never feel like a victim of my circumstances or a hopeless bystander. Instead, I feel empowered, hopeful, and optimistic about the future. It’s a future that helps me to prepare for a wheelchair and offers hope for treatments or a cure.

I recently read an article that discusses survey results about participation in clinical trials, among other topics, and many of the statistics left me feeling hopeful and proud of the FA army I belong to. One result that stuck out to me involves people’s overwhelming interest — 73.9% of those surveyed — in participating in a clinical trial.

I imagine that treatments or cures are much easier to discover if patient data is readily available, which requires patients who are willing to participate.

Another recent headline I found encouraging discusses a new drug application by a pharmaceutical company developing the investigational oral therapy omaveloxolone.

No journey to discovery, whether personal or public, is without detours, speed bumps, or wrong turns. It’s impossible to know how the U.S. Food and Drug Administration will rule on such applications, but I’m encouraged that pharmaceutical companies, patients, and clinical teams are actively working to get us closer to treatments than we’ve ever been before.

I may sometimes forget to include FA in how I map things out. But thankfully, other people, companies, and clinical teams don’t forget, nor do they let challenges and setbacks serve as an excuse for giving up.


Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.

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