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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!


Nara Fernandes Lucio

Nara FernandesMy name is Nara, I'm 27 years old, and I currently live in João Pessoa, in the State of Paraiba, Northeast of Brazil.

It's been ten years since I was diagnosed. I was 16-17 years old and a high school student. I started using a wheelchair when I was 23 years old. For me, the transition was a mix of anxiety and a sense of freedom. Like many people, I thought that the wheelchair was a prison until I found out that it brought me independence and allowed me to go to many places on my own. I need to have moments when I feel alone and independent. My moments of anxiety always happened when I met other people. The way they looked at me, the hidden pity, the questions, all of that made me uncomfortable and anxious about their reactions. It took me a while to learn how to deal with situations like that and to understand which things and behaviors I could change or be beyond my reach to change.

Sahithi Dingari

Sahitia 2Name: Sahithi Dingari

Age: 29

Where do you call home? I am from Hyderabad, India.

What is a current goal you have with your education? How will FA add to your future? I have completed my Engineering degree in Information Technology. The onset of FA started when I was 22, and my mobility issues did interfere with my education as it was a bit difficult for me to go to college every day. Further, I wanted to pursue my masters, but I had to let go of the dream mid-way. FA did interfere with my career aspirations, but it also helped me become a powerhouse of confidence; it helped me get closer to writing.

February Teen Hangout 2020

Screen Shot 2020 02 21 at 6.18.59 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 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. February's hangout will be led by FARA Ambassador Michelle Huebner.

February FA Hangout 2020

February HangoutIn honor of Valentine's Day, let's talk about relationships! How does FA affect your relationships? Let's talk! This Hangout will be led by ambassadors Morgan L and RJ.

When: Tuesday, February 25th & Wednesday 26th at 8-9:30 pm EST. Hangouts will be held on the last consecutive Tuesday and Wednesday of the month (except for holidays and the like) at 8-9:30 pm EST each of the two days.

Glenn ter Borg & Katia Gomes

Katia 5Name: Glenn ter Borg

Age: 47 (born 1972)

Where do you call home? Katia and I live in Teresina, Piaui, Brazil

Education: Computer Sciences, 3D Animation, Graphic Design. Now retired from working as a video editor at a TV station, I'm planning to create short animations based on my own adventures!

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