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FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


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.

July Teen Hangout 2020

Screen Shot 2020 07 28 at 6.47.13 PMJoin the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. This is simply a place to meet and talk to other people who may be going through struggles and good times similar to you. There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

Join our Thursday night hangout this month in a discussion lead by FARA ambassador Kyle Waterman about "Tips and Tricks" that make living with ataxia easier Tell us what you do, learn what other teens do. Help other teens (and FARA Ambassadors) by sharing your life hacks. Join us to talk or just listen. We are sure you'll find you aren't alone! It is just a relaxed conversation...the theme gets us going, but we definitely don't stick to it! It isn't counselling.

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

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