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FARAFARA Cure FA

Billie Wells

BillieWells1Name: Billie Wells (JoJo)

Age: 26

Where do you call home? Farmington, Michigan

Education: I would like to be a physiologist, FA has humbled my life and opened my mind and made me less judgmental.

What's a typical day for you? A typical day for me is school or doctors appointments, physical therapy. Riding my Catrike has become a major part of my life.

How long have you known you are living with FA? I was diagnosed at age twelve. 

Are there any others with FA in your family? My sister Vanessa. She passed away three years ago.

Describe your transition from walking to walker/wheelchair: It was very hard to transition and try and make your body not do something it was made to do.

BillieWells2Describe an adaptation and/or transition you have had to take due to living with FA: Everything from getting in/out of the car to showering. Patience is very important.

What do you like to do to stay active and what type of exercises work for you to stay strong? Riding my new Catrike and physical therapy.

Do you have any hobbies or special interests? Shopping! My dog Beanie – he is a white boxer.

What is a good trick to make daily life easier? Laughter!

When FA gets you down, what do you think/do to feel better? I tell myself I'm not alone.

What is one way living with FA has POSITIVELY affected your life? The one way FA has positively affected me would be the way I appreciate even the smallest things.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? The best advice I could give someone would be to pick your battles.

What is the first thing you want to do when a cure/treatment to FA is found? The first thing I would do when the cure is found is 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? People can think whatever they want – I know who I am and if you want to know me too, just ask me.

Tell us a little more about you…My friends and family call me JoJo

You recently won a new Catrike trike through the Ataxian Athlete Initiative (AAI). How are you enjoying ttrike ? Tell us about any fun adventures and/or future plans! OMG I love it! It's so cool I still can't believe I won. I want to educate people and possibly inspire people.

We are STRONGER TOGETHER! Find a new Meet the Community interview every Monday.

AlexFieldingmtcsignatureAlexFielding


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: info@cureFA.org.

 

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