Brian Haffey Jr Name: Brian Haffey Jr

Age: 36

Where do you call home? Long Island, NY.

Education: Bachelors in Accounting. In the middle of CPA Exams (passed 2, took 3rd on Monday, if passed, I have one left).

Who do you live with? My girlfriend

What do you do for a living? Work remotely. In April of 2020, I started my own bookkeeping company.

How long have you known you are living with FA? June of 2020, I was finally diagnosed. I’ve been dealing with worsening symptoms for 15+ yrs but took 4-5 neurologists and numerous tests, lastly genetic screening was done to be diagnosed.

Describe your transition from walking to walker/wheelchair. I have not transitioned to a chair as of yet. I have experimented with a cane with little success. Currently I will walk a lot when available, but my max distance has decreased noticeably in the last two years.

What do you like to do to stay active and what type of exercises work for you to stay strong? I credit a lot of being able to suppress FA symptoms from weight training. After I lost the ability to play sports, lifting really sustained my strength and coordination to a point. In the last year and half I have picked up Triking and absolutely love it. It was the cardio piece I had been missing at the gym, and it has me outside and going places I would not otherwise.

What is a good trick to make daily life easier? Laugh at yourself and look for reasons to be grateful, there are many things we tend to forget.

When FA gets you down, what do you think/do to feel better? Try to do something for someone else and forget about myself for a while.

Brian Haffey JrWhat is one way living with FA has POSITIVELY affected your life? It has given me gratitude.

What is a favorite motivational quote of yours? Whether you think you Can, or you think you Can’t, you are RIGHT.

What piece of advice that someone with FA has given you that encourages and inspires you? I can’t think of one thing in particular, but I can’t describe the weight lifted off my shoulders the first time I got to speak to someone else with FA. The bond is instant. What is the best advice YOU could give to a person who has been newly diagnosed with FA? A “diagnosis” doesn’t change you. You are the same person you were the day before your diagnosis. Only now you know a little more than you did before, and you can use that to your advantage. Get involved with the FA community, there’s endless amounts of love, support, motivation, and inspiration here.

What is the first thing you want to do when a cure/treatment to FA is found? Run, feel the wind in my face again. Swing a baseball bat, dance, go for a long walk on the beach.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I’ve always lived life like there is no tomorrow, even before FA. Although foolish at times, and I’ve made mistakes, looking back on the friends, stories, experiences I was able to enjoy I am very glad I did. “Live Life”, whatever that means to you, just do it, your future self will thank you!

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