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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: Jeremy Cowart
Age: 43
Where do you call home? Franklin, TN
Education (degree(s): Graduated from Middle Tennessee State University with a degree in Graphic Design.
Who do you live with? My wife and four children.
Name: Corinne
Age: 35
Where do you call home? Near the beautiful city of Lucerne, Switzerland
Education (degree(s): I did an apprenticeship as a businesswoman (in the office). After I did some further education in marketing, I quit my job and started to do what makes me happy – traveling.
Who do you live with? I live alone in an apartment.
Name: Frank Van Linden
Age: 38
Where do you call home? Antwerp, Belgium
Education (degree(s): I have a degree in marketing, but it was too hard to find a job due to my disease. That's why I studied multimedia. After my studies, I only worked in Winter, because I wanted to enjoy life and not being at my desk when the weather was good outside.
Who do you live with? I live with my girlfriend, every two weeks with her children and my dog.
Name: Zach Gault
Age: 22
Where do you call home? North Carolina
Education (degree(s): I have an Associates in Arts Degree
Who do you live with? I currently live with my older brother.
What's a typical day for you? A typical day for me would be waking up and eating breakfast then showering. I watch TV, eat lunch, play Xbox sometimes and then go to the gym at night depending on how I’m feeling that day.
How long have you known you are living with FA? I was diagnosed with FA when I was 14 years old. I was diagnosed through genetic testing.
Are there any others with FA in your family? No other people in my family have FA.
Name: Deniz Nascimento de Santana
Age: 38
Where do you call home? I was born and live in Antônio Gonçalves, a small town in the countryside of Bahia State, in the Northeast of Brazil.
Education: I have a degree as a teacher’s assistant, and I have finished high school.
Who do you live with? I am divorced and live with my 15 year old daughter
What is a typical day for you? This is my daily routine: twice a week I have physical therapy or pilates (I alternate every two months) + acupuncture, once a week I have a speech therapist, once a week I talk to my psychologist, on Sundays i go to church and the spare time i spend at my little store. It helps me pay the bills and keeps my mind busy doing what I like. At night, I watch a little bit of TV before going to bed. Well, I have to change a little bit what I said. This was my routine before the pandemic. Pilates, psychologist and church are now virtual. I went through the last 8 months without therapy and some of my business clients have become virtual.
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