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FARA Ambassador Program

The 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.

Keith O’Brien

Keith OBrienHey everyone! I'm Keith, and I live on the Jersey Shore. I was diagnosed at about 12 years old alongside my older brother, who was a High School Junior. I was active in the community at the beginning, but life got in the way for a few years. Now I'm back and more excited than ever to be a part of it!

I look forward to all of the unique people, I'll be able to meet and befriend through my ambassadorship. You'll usually find me making music or fishing, and you'll always be welcome to join me at either!

Andy Sorter

AndyI am a sales associate at Sportsmans Warehouse in Casper, Wyoming. I love being outside at all times, except for when it's cold and windy. I do hunt, fish, and camp. I was diagnosed with FA at 8. I am an Eagle Scout (the highest rank in Boy Scouts you can achieve).

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.

Harley Danielle Shepherd

HarleyI was born 27 laps around the sun ago in Sagittarius, the moon in Scorpio with a rising sign of Leo.. yeah, I kind of like astrology.

Can you tell?

I was born and raised in wonderful Colorado. Spending most of my childhood outside panning for gold, exploring mother nature, swimming & boating. I was diagnosed with Friedreich's Ataxia when I was 11 and coming from an active childhood as I had, I was quite devastated. As walking got harder and it was more noticeable that I was different, I just didn't do anything. I skipped school & never left the house. It wasn't until I was 17 at a family trip to Mount Rushmore when my uncle said, "You're either using this wheelchair I brought or staying in the truck." We ended up completing the Presidential Trail, 400+ stair hike around Mount Rushmore.. all in a wheelchair!

Morgan Talevich

Morgan THey guys! My name is Morgan Talevich and I am from Louisiana. I am 30 years old and I was diagnosed with FA when I was only 6. Since then I have had many ups and downs but I choose to focus more on the ups. I have an amazing, loving husband and 2 beautiful children. Aaannddd I received these wonderful gifts long after I was diagnosed.

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