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FARAFARA Cure FA

Brian Bianchi

Name: Brian Bianchi
 
Age: 21
 
Where do you call home? Newington, Connecticut. My parents are moving to South Carolina (Charleston area) in about two months, so that will probably become my new home.
 
Education: I am a senior at the University of Hartford (GO HAWKS!). I am majoring in Computer Science and double minoring in Mathematics and Multimedia Web Design. I am very passionate about technology and love to create things and solve problems.
 

What's a typical day for you? I am in my third internship at Travelers Insurance so I work a normal 8 to 5 work day. After work, I go to happy hour with friends or go home to catch up on some sleep. On the weekend, I hang out with friends, swim, bike, and mess around on the computer.

How long have you known you are living with FA? (When and how were you diagnosed?) I was officially diagnosed with Friedreich's Ataxia at the age of 13. Ever since I was young, I loved sports. I played soccer, lacrosse, baseball, and street hockey. I also loved to snowboard, swim and scuba dive. When I was around the age of 12, my parents noticed that I was a bit clumsy and sports were becoming more difficult. After several tests, I was diagnosed.

Are there any others with FA in your family? There are no other family members with FA. I have one younger brother and he isn't even a carrier. I guess I got the lucky genes :)

Describe your transition from walking to walker/wheelchair. Describe an adaptation and/or transition you have had to take due to living with FA. I transitioned from walking to a wheelchair when I was 19. It was definitely a difficult transition, but gave me the greater independence that I needed. A current adaption that I am making right now is I am in the process of getting hand controls for my car (which I can't wait for!).

BrianBianchi2What do you like to do to stay active and what type of exercises work for you to stay strong? To stay active, I like to use my recumbent trike, swim, and do body weight exercises. I am planning on joining a wheelchair racing team in September where I will be training for a half marathon!

Do you have any hobbies or special interests? I love music and have picked up the bass guitar again this summer. I love to go to concerts and explore different genres. Currently, I am into Phillip Phillips!

As mentioned before, I am passionate about technology. I love to build websites for others and explore new technologies. Right now I'm exploring the capabilities of Linux operating systems and the WordPress website framework.

What is a good trick to make daily life easier? Stay positive and stay busy! I am a very goal-oriented person, so making goals is definitely a trick of mine.

When FA gets you down, what do you think/do to feel better? When I get down, I listen to music. Music has an amazing way of changing your mood!

What is one way living with FA has POSITIVELY affected your life? FA has positively affected my life in many ways! I have met so many people that I wouldn't have otherwise, I know who my real friends are (they can see past my physical differences), and I have a greater mental will power to succeed.

What is a favorite motivational quote of yours? "Do more." -Casey Neistat. To me, this means make the best out of any situation. Explore and make a positive mark on this world.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Try new things and take risks. It is easy to do what is comfortable, but you will be missing out on so much. Also, don't dwell on what you can't do, focus on what you CAN DO.

What is the first thing you want to do when a cure/treatment to FA is found? Dance, climb a mountain, snowboard, and play the acoustic guitar.

"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? FA doesn't control or define me. I hope I am known for my strengths rather than my weaknesses.

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

AbbyYinglingmtcsignatureAbbyYingling2015


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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