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FARA Ambassador ProgramThe 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.
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.
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Name: Cassydee Buttadaruo
Age: 20
Where do you call home? I live in Georgia
Education/Career: I have an Associate’s degree in Interdisciplinary Studies. I’m unsure if I’d like to continue with school, but if I were too, I’d like to get a Bachelor’s degree in English because I really enjoy writing.
Who do you live with? I currently live with my parents and siblings who all range from the ages of 3 to 11.
Saturday 1/30 2-3 PM ET
Join the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. This is simply a place to meet and talk to other people who may be going through struggles and good times similar to you. (If you don't have ataxia, you are not allowed to participate in the hangout.) There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.
Our hangout this month is a discussion about going to school during a pandemic. What are you going: online, hybrid, 100% in-person? Do you like it, hate it, somewhere in-between? Let’s talk about how you’re managing education and your social life during a time when most of us have had to make a lot of changes to how we live.
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.
Name: Trim Gjelaj
Age: 31
Where do you call home? I am from Peja, Kosovo, but grew up in Papenburg, Germany.
Education/Career: I finished school for design in Pepenburg, Germany.
Who do you live with? I live with my mother and two brothers. What’s a typical day for you? I wake up. Drink coffee, have breakfast, do exercises, and whatever is my plan is to do for the day.
With many of our usual activities on hold for now, we want to know: how are you staying busy at home?
Join Noelle and Allie for this discussion. Share your hobbies and maybe find a new one! January 26 and 27!
Name: Cody Ryan
Age: 33
Where do you call home? Lexington, Kentucky
Education/Career: Bachelor’s degree in journalism from the University of Kentucky
What’s a typical day for you? I spend most days reading and watching television.
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