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Name: Raena

Age: 13

Where do you call home? Sioux Falls, South Dakota

Education: 8th grade.

How long have you been living (or known you are living) with Friedreich's Ataxia? One year.

What do you like to do to stay active and what type of exercises do you do to stay strong? Playing with friends, theater and Pilates.

What's your most comfortable pair of shoes to wear? No shoes.

Do you participate in any adaptive sports or recreational activities? Performing Arts.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Being diagnosed doesn't change you. You're still your strong, lovely self. It does not define you. It just makes you stronger.

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? I want to try sports and dance.

"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? It is most definitely true. Just because I was diagnosed with a disease doesn't mean that I am any less myself. It didn't change what I am.

We are stronger together! Find a new "Meet the Community" interview every Monday. Christina


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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