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!

Dee Smith

Name: Dee Smith

Age: 26

Where do you call home? Sheffield South Yorkshire, England

What is your education? I studied performing arts at college, went on to do a creative writing undergraduate degree with honors. Then went on to do a Postgraduate in Psychology. I fell into modeling and creating. But having FA really helped me find my calling by being a disabled advocate. Representing disability honestly and beautifully.

Who do you live with? I live on my own with my fluffy black and white cat in a small apartment.

What's a typical day for you? A normal day for me involves checking and replying to emails and DMs on my social media. Writing, planning and scheduling photoshoots and creative projects, meetings, podcasts. working out, cleaning, cooking. Chores, shower and bed with my snuggle bug of a cat.

When and how were you diagnosed? I was diagnosed with FA at 19. But I knew something wasn’t right at 16. My balance felt off. Extra work to be coordinated. A blood test gave me a name to my condition.

David Zehnder

Name: David Zehnder

Age: 28

Where do you call home? Nürnberg, Germany

Education: Electronics technician for devices and systems, completed further training as a state-certified technician (electronics)

Who do you live with? I live with my parents.

What's a typical day for you? My day starts at 5.30am. At 6am, I start working (as IT support) until noon (45min lunch break). I keep working till 2pm. At 4pm, I have one hour of physical therapy. Then I get home, have dinner, relax in front of the TV or by listening to the radio. I go to bed at 10pm.

How long have you known you are living with FA? It started slowly in 2013 with walking instability. I got the diagnosis in 2016 (genetic test).

Hamilton Family

Name: Amelia Hamilton

Age: 10

Where do you call home? Ohio

Education: Grade 5

Who do you live with? I live with my mom, dad, my older sister, a cat and two bunnies.

What's a typical day for you? I love to sleep in! But most days I wake up earlier and if I get dressed, eat breakfast,and brush my teeth fast enough I get to play Super Mario with my parents before I get on the bus. I go to school where my favorite class is math and then come home, feed my bunnies, play, do my homework, go to the gym and then eat dinner while we watch the Great British Baking Show. Bedtime usually involves reading with my mom.

Hüseyin

Name: Hüseyin

Age: 34

Where do you call home? İzmir, Turkey

Education: I am graduated from University (bachelor degree).. In the future I want to educate for master in the field of financial mathematic. I guess FA will effect negatively going to university by myself, but I will never give up and I will have success with my goals both in school life and in my business life...

Who do you live with? I live with my older sister and my mother.

What's a typical day for you? I always go to my work office on weekdays, until 5 p.m.

Katherine O'Connor

Katherine O'Conner Name: Katherine O'Connor

Age: 30

Where do you call home? I live in an apartment near Boston

Education (degree(s): I have a bachelor's degree in engineering from MIT

Who do you live with? My boyfriend of 5 years

What's a typical day for you? I work in software, so I work from home most days, but occasionally get a ride into the office. Either way, I try to spend at least an hour a day moving my body in some way.