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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 Osama Alawik
Age 20
Where do you call home? Tripoli, Lebanon
Education: Ever since I was young, I have had an obsession with computers. When I was diagnosed with FA, I didn't think I would be able to achieve that dream. I knew it would be physically difficult, but I was going to do it. I finished high school three years ago with Information Technology diploma and now I’m studying Computer Science.
Who do you live with? I am single and I am currently living in Istanbul, Turkey.
Name: Brett Davis
Age: 38
Where do you call home? Fayetteville, NC
Education degree(s): Associates degree in computer programming
Who do you live with? I live by myself.
What's a typical day for you? I try to exercise somehow every day. I like to play a little chess with the FA friends and take care of myself.
How long have you known you are living with FA? I was clinically diagnosed when I was 12, so 26 years ago. It wasn't confirmed in a test until I was 15.
Are there any others with FA in your family? No
Name: Matthew Jordan Penman
Age: 35
Where do you call home? Calgary, Alberta. Canada.
Education degree(s): I have a diploma in Professional Counseling, Certificate in Addiction Work and I am currently working on my Masters in Counseling.
Who do you live with? I am living with my wife, my father, who lives with us, and our fur babies, Fergus (Husky/German Shepherd), and Charli (Purebred Boxer).
What's a typical day for you? Currently, I am working in a harm reduction facility for seniors and working on my portfolio for my RPL to get into a master's program. We are trying to buy a house right now, and it's our first, so it's very time-consuming.
Name: María Luisa Ledesma Cano
Age: 27
Where do you call home? Talarrubias, Badajoz, Spain
What is a current goal you have with your education? My dream would be to work as a social worker, because I am studying it.
Who do you live with? I live with my mother, but in the school period, I live in a center where my life is independent.
What's a typical day for you? Well, in my town, it's a little boring because there is little accessibility. But where I live for a few months, I get up to study and do activities.
Name: Elsaid Younes
Age: 35
Where do you call home? I live in Cairo, Egypt.
Education degree(s): I hold a master's degree in theoretical chemistry from Lund University in Sweden.
Who do you live with? I live with my family, and I am Single.
What's a typical day for you? Staying at home on my computer.
How long have you known you are living with FA? I was diagnosed with FA in 2001.
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