Friedreich's Ataxia Research Alliance

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!

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.

Allison Dana

Name: 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.

Alex Fielding

Name: Alex Fielding

Age: 26

Where do you call home? Rhode Island-the Ocean State!

Education: I graduated from Bucknell University with a BS & MS in Chemical Engineering, minoring in Biomedical Engineering and Statistics. I absorb new experiences every day and expect more schooling in my future – I love to learn!

Occupation/Employment: I am currently a Process Engineer for a ceramics manufacturing company. In 3 years they’ve introduced me to hundreds of great people across three different divisions, and brought me from my comfort zone in the northeast to new connections in Arkansas and Texas. Staying focused and being challenged on the job keeps me motivated.

Danny Tanchez

Name: Daniel Tanchez (but really I prefer Danny)

Age: 19 (a little note: Danny was 18 when he completed this interview a couple weeks ago...Happy, Happy Birthday, Danny!)

Where do you call home? Fort Lauderdale in Sunny South Florida.

Relationship Status: I am single.

Education: I am currently a student at Johns Hopkins University, double majoring in Economics and Chemical & Biomolecular Engineering with a concentration in interfaces and nanotechnology and a minor in the History of Science & Technology. (If you didn’t guess by now, I like math and science)

Employment: I am currently a student and a research assistant in a laboratory that focuses on nanotechnology, specifically using colloids within the body.

Janesh Wadhwa

Name: Janesh Wadhwa

Age: 22

Where do you call home? Haryana, India

Education: I have completed high school and then furthered my education myself.

Employment: I stay at home and take care of myself and I also work as a volunteer at "Wings of Angelz,” that aims to make the world wheelchair friendly. Being a part of this organization gives me a proud sense of achievement of being the change I wish to see in the world.

How long have you been living (or known you are living) with Friedreich's Ataxia? When I was 9+ years old I used to walk weirdly and used to fall ill a lot, my parents thought it was related with my sister’s problem (she was living with FA at that time). So they took me to 1-2 neurologists, but they couldn’t diagnose me and ended up prescribing vitamins, but still things weren’t good with me. So my parents took me to another neurologist, he ordered a genetic test and after a few days I was officially diagnosed with FA. I was 10 at that time.