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Donovan Simpson

Name: Donovan Simpson

Age: 18

Where do you call home? Yonkers, New York 

What grade are you in? What is your dream job? I’m a senior in high school and my dream job is to work in game design.

Who do you live with? My Mom and Dad.

What's a typical day for you? I go to school and I come home :) 

How long have you known you are living with FA? I started showing symptoms when I was like 5 and was diagnosed at six. 

Are there any others with FA in your family? No, just me. 

Describe an adaptation and/or transition you have had to take due to living with FA. When I was about 10, I  broke my right arm. Ever since then, I have been in a wheelchair.  

What do you like to do to stay active and what type of exercises work for you to stay strong? I like to work out to stay fit. 

Do you have any hobbies or special interests? I enjoy playing video games.  

When FA gets you down, what do you think/do to feel better? I think of ways to make it better! 

What is one way living with FA has POSITIVELY affected your life? I would not know most of the people I do if it was not for FA. 

What is the best advice YOU could give to a person who has been newly diagnosed with FA? From my understanding, I can say, it gets better from now on.

What is the first thing you want to do when a cure/treatment to FA is found? I want coordination again!!

"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 think with or without FA we live and prosper and me I just live!


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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact:


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