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FARAFARA Cure FA

Alison Avery

Alison 2Name: Alison Avery

Age: I am 24

Where do you call home? I was born and raised in Tampa, FL. I've lived in North Carolina and New York City, but currently call Tampa home.

Education: I graduated from Elon University in May of 2016 with a bachelor's degree in Human Services Studies and minors in Business Administration, Psychology and Early Childhood Education.

How long have you known you are living with FA? I first had symptoms of FA when I was 15 and in high school. We were able to diagnose it very quickly because my sister also has FA and was diagnosed prior to me.

Are there any others with FA in your family? I have a sister with FA.

Describe your transition from walking to walker/wheelchair. Every transition I've had to face has never been a negative in my opinion. In college, I started using a walker to get around campus. I thought it was great. I had more energy because I wasn't constantly worried about losing my balance. In my third year, I applied to go on a 3-week Study Abroad course that would take you through Europe and the UK. I decided right away to get a wheelchair for this because it would allow me to enjoy the trip and travel around as much as my friends. I knew that I would not enjoy myself on the trip if I was constantly exerting my energy into walking. It was pretty easy for me to decide to get a wheelchair and since then, I have never regretted it.

AlisonWhat do you like to do to stay active and what type of exercises work for you to stay strong? Twice a week I go to physical therapy at my local hospital. We do many different exercises, but my favorites are doing sit to stands or walking in the parallel bars. I love exercising and the equipment at the physical therapy location makes doing so very easy.

When FA gets you down, what do you think/do to feel better? When FA gets you down, it's easy to go down the tunnel of "Why me?" "What did I do to deserve this?" But it's so important not to. I have to remind myself that I am so blessed to be surrounded by family and friends that support me and that there is much more going on in my life than my FA.

What is one way living with FA has POSITIVELY affected your life? Living with FA has given me the opportunity to meet so many wonderful people, whether that be in friends who have FA, researchers or supporters of FARA. I am so thankful for these relationships.

What is a favorite motivational quote of yours? "Our greatest glory is not in never falling, but in rising every time we fall." - Confucius

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Don't google Friedreich's Ataxia, and accepting help does not mean you are accepting defeat.

"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? To me, this statement means that I accept that I have FA right now, but am not accepting that I will my whole life. I do not close doors in my life with the fear that one day I may not be able to succeed. If I can do something now, no one is stopping me—especially FA.

AndreaKiess mtc sig 16


About the Author

FARA Ambassador Program