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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:

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!

Max Corrigan

max-corriganName: Max Corrigan

Age: 19

Where do you call home? I’m I am from Bristol in the U.K.

Education/Career: I have got my maths GCSE and I am working towards a Media degree, so I can work at home.

Who do you live with? I live with my mum, step dad, and sister, but I would love to move out. I just need to be in the right situation first.

What’s a typical day for you? I wake up at about 6am and workout for a little while, then I do college work, edit or game in the afternoon, and finally shower late as I feel most confident with my walking ability.

María Mercedes Sebastián

maria-mercedes-sebastianName:Maria Mercedes Sebastián

Age: 32

Where do you call home? I’m Ecuadorian, but my parents and I are living right now in Madrid, Spain.

Education/Career: I studied administration and I also have an MBA, but actually I’m not working because working demands a lot of energy that unfortunately I don’t have at the moment. I use my time to prepare my knowledge in other areas like how to be happy and feel near to God. In fact, I’m thinking about studying a new career with something to do with Religious Sciences, I have a couple of options but I don’t decide which one yet.

Who do you live with? I live with my parents, and I’m so thankful for them and me be their daughter because they are the best parents ever always thinking of me, willing to serve and help me.

What’s a typical day for you? A typical day for me is: I wake up like at 8am, then I start the day watching a YouTube video called 10 minutes with Jesus that is about the reading of the day of the Holy Scriptures (I really think that helps me to start my day in a better way). Then my father gives me my breakfast, and when I’m finished with my breakfast, my mother helps me to have a shower. My mom helps me to get dressed and when I’m ready, I exercise like for an hour and a half with my father (because I’m not going to physiotherapy because of the virus). I listen to some music, and like at 2pm my mom calls me to lunch. At 3 pm I start my prayers, (I can’t explain how much peace it gives me I feel that is the moment of the day where I rest). When I finish my prayers, I watch Masterchef Ecuador by YouTube and then some Catholic conversion testimonies and some predications. I eat dinner and finally I read the Scriptures and Catholic Cathesism, at 10pm I brush my teeth, then I say a short prayer and after everything I sleep.

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-piresName: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.

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