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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!


Marzia

Marzia Name: Marzia

Age: 28

Where do you call home? I am Afghan refugee and I live in Mashhad, Iran.

Who do you live with? With my older parents and also my patient siblings.

What's a typical day for you? I use my wheelchair and go to my classes.
How long have you known you are living with FA? When and how were you diagnosed? I had some symptoms of the disease before I was 18 years old but it got serious about 10 years ago, I’ve used a wheelchair for the last three years. It’s about one year that I’ve used an electronic wheelchair.

Are there any others with FA in your family? Yes two brothers and one sister.

Edanur Sekmen

Edanur Sekmen Name: Edanur Sekmen

Age: 18

Where do you call home? Turkey

What is your education? I am a high school graduate.

Who do you live with? I live with my mother, father and siblings.

How long have you known you are living with FA? I was diagnosed with FA 1.5 years ago.

 

Omega A. Urban

Omega 2 Name: Omega A. Urban

Age: 41

Where do you call home? the Florida Panhandle.

Education (degree(s): I graduated from The University of West Florida in 2009 with a BA in Interdisciplinary Social Sciences, with focuses on Psychology and Criminal Justice. I am planning to take some online classes soon, focusing on writing and proofreading, to better enable me to do freelance work in that area.

Who do you live with? I live with my husband Larry, our eleven-year-old daughter Emmalee, our nine-year-old lab mix Kenzie, and our newest addition, our one-year-old highly energetic Plott Hound Nillie.

What's a typical day for you? I am a stay-at-home mom. I typically sleep in and start my day off slowly, letting my husband take care of the morning necessities. I'm a night owl and often suffer from insomnia, so mornings are not my favorite time of day! By late morning, I am awake and doing various things on my laptop or phone like playing games, watching Twitch, writing, designing documents and charts, listening to podcasts, and/or chatting with friends. When my daughter gets home from school in the afternoon, I help her with homework and spend time with her (if she wants!). My husband cooks dinner in the evening, and we all eat together, usually over an episode of Bob's Burgers - unless I am modding a Twitch stream for my friend that evening. At night, I sometimes play a game with my daughter, read, listen to more podcasts, and/or get back on my laptop.

Brittany Sommerfield

Brittany Sommerfield 1 Name: Brittany Sommerfield

Age: 28

Where do you call home? Manitoba, Canada

Education (degree(s): : It’s at a complicated point. I was (still am) a travel agent. Most recently I worked from home casually but as many others in the industry, the COVID-19 pandemic hit hard. I took a break and I found new focuses. I am a FARA ambassador on the leadership team, I do bookkeeping work on my father’s self-employment, I volunteer with APC (Assiniboine Park Conservancy- mostly at the zoo) and other odd jobs.

What is a current goal you have with your education? I am thinking of focusing more professionally on bookkeeping, hopefully remaining in the travel industry. I will absolutely remain within the ataxia community, of course it personally interests me, I also learn so much and it is very rewarding being with FARA, Ataxia Canada, and other organizations. Working with APC is new but I love it and I don’t plan to leave.

Who do you live with? My parents. They are pretty good roommates.

What's a typical day for you? It tends to be different. Weather is a huge factor. I’ll work-out, I’ll plan video calls or have zoom meetings a couple times a week. GST reports, timesheets, email cleanouts, family time (I have 2 sisters and 3 nephews and we are very close), house chores, seeing some friends, going to the local zoo or park to volunteer; these are just some things that are always in my week. It helps my mental and physical health to be busy (within reason).

Jafar Marizapoor

Jafar Mirzapoor Name: Jafar Mirzapoor

Age: 25

Where do you call home? I am an Afghan refugee and currently I live in Iran.

Education (degree(s): I am graduated from high school and I study computer by myself

Who do you live with? With my parents and siblings (they are patients too)

 


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