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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!


FA Hangouts - February 2021

20210114_123951_0000Jake and Brittany want to know: what are your long term goals?

Are they on hold right now because of COVID-19? Or are you still going strong? Let’s talk about it! February 23 and 24!

Vicente Salgado Pires

vicente-salgado-pires Name:Vincente Salgado Pires

Age: 27

Where do you call home? Rio de Janeiro, Brasil

Education/Career: Bachelor’s degree in Biomedical Sciences, Master’s degree in Molecular Biology, and a current PhD student.

What’s a typical day for you? Before the quarantine, I used to wake up at 7:30 am and get ready to go to the lab. I typically would stay there until 4 pm, with classes in between. I did pilates three times a week. On the weekends, I used to meet friends and family.

FARA Teen Hangouts - February 2021

fara-teen-hangouts-february-2021 Saturday 2/13 1-2 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.

We will be talking about Rare Disease Day. It’s coming up on 2/28/21. Do you know what it is about? How do you think we’re strong when we join forces with our Rare Disease community? What can you do (virtually) to participate in Rare Disease Day?

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.

Sean Sommerville

sean-sommerville Name:Sean Sommerville

Age: 21

Where do you call home? Bay Area in Northern California

Education/Career: Bachelors of Science in Aeronautics

What is your relationship status? Do you have children? I’ve been dating my girlfriend Marlie for two years.

Cassydee Buttadaruo

cassydee-buttadaruo 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.

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