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FARAFARA Cure FA

Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


Mary Nadon Scott

Name: Mary Nadon Scott

Age: 33

Where do you call home? Northfield, Vermont (Central Vermont)

Education: I received my Bachelor’s Degree in Nursing (Registered Nurse) from the University of Vermont in 2004.  However, I am currently a stay at home Mom.

What is your relationship status? Do you have children? I am happily married to my wonderful husband Kevin, and I have 4 children; 2 step-children (Isaac 10 and Bella 8) and 2 born to me (Elijah 4 and Gabriel 2).

What's a typical day for you? I am a stay at home Mom, and stay busy with my 4 year old in pre-school and my 2 year old toddler.  I also try to keep a regular work out routine with riding my recumbent bike, wheelchair aerobics, and alternating seasonally between aquatic therapy and wheeling laps on the track at a local university.

How long have you known you are living with FA? Growing up I was always the clumsy girl; tripping a lot, very poor balance, ran awkwardly, etc.  So looking back now, I can see signs of FA, however at the time, I always attributed most symptoms to having scoliosis (I was diagnosed with that in 8th grade, by a school nurse).  My FA diagnosis came later, when I was in college in 2002.  I have been living with FA for 13 years.

Are there any others with FA in your family? I am the only one in my family with FA.

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Clint Stewart

Name: Clint Stewart

Age:31

Where do you call home? Houston, TX

Education: Bachelors' in Business/Communication from Grove City College (PA); Masters' in Business Administration from Mount Vernon Nazarene University (OH)

What is your relationship status? Who do you live with? I am very single and share an apartment with my dad and his girlfriend.

What's a typical day for you? I don't have many typical days.  I have a physical therapist visit twice a week, and volunteer at the local hospital, so it all depends on the day.

Are there any others with FA in your family? I am the only member of my family "lucky enough" to have FA.

Describe your transition from walking to walker/wheelchai: I was able to walk (shakily) through high school.  After graduation, I had my spinal fusion operation, which slowed me down a little.  Over the past 12 years, I have made the transition from occasionally standing to full-time wheelchair user.

What do you like to do to stay active and what type of exercises work for you to stay strong? To stay active I go to the gym at my apartment and lift weights sometimes, I am not a gym rat by any means, but those few exercises help my upper body strength.  My physical therapist focuses mostly on my legs and core with stretching and low-impact work.

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Joe Tyler

Name: Joe Tyler

Age: 33

Where do you call home? Cincinnati, Ohio

Education: BS Finance from Saint Louis University

What is your relationship status? I’m engaged to Karen Ried.

What's a typical day for you? I am an Area Sales Manager for Hogan Truck Leasing. We assist companies with truck leasing needs, alternative financing, maintenance management, etc. My job requires me to regularly visit customer locations, tour our Cincinnati facility, etc.

How long have you known you are living with FA? Diagnosed in 2012, been showing balance issues since 2002.

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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.  

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Allison Dana

Allison DanaName: Allison Dana

Age: 35

Where do you call home? Burlington, Vermont

Relationship status? Do you have children? Married for four years with three year old identical twin girls.

Occupation/Employment: Stay-at-home Mom.

Education: Bachelor of Science in Nuclear Medicine Technology.

How long have you been living (or known you are living) with Friedreich's Ataxia? I was 19 and a junior in college when I was diagnosed although looking back, I was showing symptoms about 16. Before I had the genetic test, I was taking Anatomy. The last section of the class was CNS (central nervous system). When I read the description of ataxia, I knew that's what I had. I didn't know what kind but found out it was FA a few months later when I got the results of the genetic test.

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