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FARAFARA Cure FA

Alena and Alisa Wolfson

Name: Alena Wolfson
 
Age: 18 years old
 
Where do you call home? I live in Glendale AZ
 
Are there any others with FA in your family? My younger sister, Alisa. (read Alisa's interview below)
 
Describe your transition from walking to walker/wheelchair. It was very sudden. I got sick with a respiratory virus, then when I got better I wasn’t able to walk anymore. 
 
Do you have any hobbies or special interests? I love writing stories and reading fiction.  
 
When FA gets you down, what do you think/do to feel better? I read and immerse myself into the fictional world. 
 
What is one way living with FA has POSITIVELY affected your life? There are incredible people that I would have never have met if I didn’t have FA like the Simpsons, the Orths, the Hartigans, the Lawsons, Bridget Asheim and HopeKids, The Bosters/Lehtos and Sharpe/Serranos and so many more.  
 
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Don’t let FA bring you down; reach out to the FA community and don’t isolate yourself. 
 
What is the first thing you want to do when a cure/treatment to FA is found? If I were cured I would want to run and play soccer again. I remember this was one of the hardest things for me - I love soccer and I couldn’t play it. 
 
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Name: Alisa Wolfson
 
Age: 14 yrs old
 
Where do you call home?  Glendale, AZ
 
What is a current goal you have with your education? Right now the focus is for me to get through high school but I’m considering a few options for college: special education teacher, maybe study abroad. 
 
What's a typical day for you? It’s summer so I’m sleeping late until 11am, then get up and eat, go on my iPod. 
 
How long have you known you are living with FA? My sister Alena was diagnosed in 2006 at 9 years old and I was diagnosed less then a year later at 6 years old. 
 
Are there any others with FA in your family? My older sister, Alena. 
 
Describe your transition from walking to walker/wheelchair. I began using a walker for a few months then I got sick with a virus and after recovering I wasn’t able to walk anymore.
 
What do you like to do to stay active and what type of exercises work for you to stay strong? I love to work in the kitchen with my dad. Using the knife keeps my coordination and hands strong and I stand against the counter also, keeping my legs strong. 
 
Do you have any hobbies or special interests? Social media, music, 5SOS, drawing. 
 
When FA gets you down, what do you think/do to feel better? I listen to music, talk to friends, draw, call my Nonny and Papa, call my Aunties. 
 
What is one way living with FA has POSITIVELY affected your life? I have met by best friend as a result of FA. 
 
What is a favorite motivational quote of yours? "Bands really help me when people make me feel like shit, the bands I love get me through everything in times when I’m totally miserable.” Ashton Irwin    "You gotta breathe, we’ll be okay, cry because I”m here to wipe your eyes." Ashton Irwin   "Real bands save fans, real fans save bands." Michael Clifford       
 
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Good and bad are gonna come, just push through it and stay strong. 
 
What is the first thing you want to do when a cure/treatment to FA is found?  I’d travel the world!
 
"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? Sometimes I really feel that FA does have me but when that happens, I find music that inspires and motivates me to face it head on. 
 
We are STRONGER together! Find a new Meet the Community interview every Monday.
 

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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