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Meet the CommunityYou 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.
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.
Name: Andrea Kiess
Age: 44
Where do you call home? Wichita, Kansas
Education/degrees: Bachelor’s degree in Psychology and Master’s degree in Marriage and Family Therapy
What's a typical day for you? I usually go to the gym 3 times a week. Other days are spent going to appointments, running errands, and volunteering for FARA. Of course, I always make time to watch TV and hang out with family and friends!
Name: Muhammad
Age: 30
Where do you call home? Iran
Education (degree): Bachelor’s degree
Who do you live with? Parents
What's a typical day for you? I work at home and online in the Iranian stock market.
How long have you known you are living with FA? Sixteen. I noticed it due to imbalance.
Are there any others with FA in your family? No
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.
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.
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.
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2020 (67)
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2018 (99)
2017 (62)
2016 (44)
Meet The Community
FARA Ambassadors
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