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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!


Márcia Ferreira Galvão

Marcia 3Name: Márcia Ferreira Galvão

Age: 59

Where do you call home? Poços de Caldas, Estado de Minas Gerais State, in the southeast part of Brazil

Education degree: I graduated in 1982 and have a degree in Brazilian Language and Literature.

Who do you live with? I am divorced with two children - 32 and 27 years old - and live with my ex-husband, who is very helpful.

What's a typical day for you? I read a lot, don't watch conventional TV (only movies and series I download on my computer. My routine includes personal hygiene in the morning, as I need help with everything. In the afternoon I use the computer to follow the news, entertainment and bank services or whatever else is needed.

Zoë Graef

Screen Shot 2020 07 27 at 10.35.08 AMName: Zoë Graef

Age: 21

Where do you call home? Würzburg, Germany

Education degree: High School degree

Who do you live with? I live in my own apartment next to my parents’ house.

What’s a typical day for you? First, I get up and ready for university. Then go there by bus or with my car. Sometimes, I hang out with my friends afterwards. Often I have some sort of doctor’s appointment and physical therapy. Most of the time, I go home and do stuff with my family and my boyfriend or for university. In the evenings I love watching series or reading and then I go to bed, apparently too late.

Osama Alawik

Screen Shot 2020 07 24 at 10.04.20 AMName 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.

Brett Davis

BrettName: 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

Matthew Jordan Penman

MatthewName: 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.

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