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Brian

Brian Hey! My name is Brian, I am 36, and from Long Island, NY (Lets go Yankees!).

I was diagnosed in 2020, after many years and almost as many doctors. Looking back, my symptoms started somewhere in my late teens. I was very athletic at that time until I tore my ACL. I never fully recovered and never got back on a field. It hurt, and for a long time I blamed myself. I ended up having 2 more surgeries still thinking and hoping it was a structural problem. And boy, looking back on it, I see how my mind can rationalize things. But slowly the limp became more pronounced, balance became worse, hand eye coordination deteriorated and I knew something else was going on. When I finally received my diagnosis, I took it mostly in stride in part because, #1 I don’t think I understood the gravity of this disease at the time, #2 I had been living with (managing) the symptoms for over a decade, and #3 I kept reminding myself I was the same person as the day before my diagnosis, only now I know more and can be more proactive against it.

My journey to become an Ambassador involved some fate and higher intervention. Less than a week after being diagnosed, my girlfriend’s cousin shared a fundraising post on FB of her neighbor who is a fellow FAer and Ambassador. What are the chances?! We became good friends, she was the first person with FA I was able to speak to, ask questions of, genuinely relate to, and she brought me in to the FA family. I am forever grateful for that. I went to my first FA symposium and Ride Ataxia event in 2021 in Philadelphia and I was truly impacted by it. First and foremost are the children affected by this disease. It pulls right at your heart. I know what dealing with this is like as an adult but I couldn’t even begin to understand the struggles they take on everyday as kids. I aspire for a quarter of their strength and perseverance. My first goal is to give them as much support as we can to assist their journeys.

Secondly, I got to hear of a few stories of how the COVID pandemic (more precisely remote learning/working) was something some FAers embraced and excelled at. Then I thought of my own path. I had gotten a degree in accounting, worked at smaller firm for years and in 2020 started my own company which offers bookkeeping and tax services 100% remotely! There are many of these and similar (historically office jobs) that are completely remote now. I hope that we can start a program that can give training on computer skills, commonly used business software etc. and give people the tools to be more independent and fulfilled in an occupation or career.

Everyday poses challenges and frustrations but this FA family is extremely powerful and I am very excited to be a part of it!

 


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