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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:

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.

Kyle Waterman

Kyle WatermanHi! My name is Kyle Waterman and I'm 21 years old. I live in Cedar Rapids, IA and I'm currently in college at the University of Northern Iowa studying Statistics and Coaching. When I was 11, I was diagnosed with Friedreich's ataxia (FA). I did not really know what it was until I looked it up. I couldn't even spell it either! I did not join the FA Community until I was 17. My first event that I went to was incredible. I try to attend events throughout the year because they are fun, and being with people that are going through similar things is awesome!

Kelly Barendt

Kelly BHi everyone, my name is Kelly Barendt. I'm 26 years old and just moved to my own apartment in Columbus, Ohio. I was diagnosed with FA at 18, just weeks before high school graduation. I currently do remote freelance work, and the rest of my time is filled with taking care of my health, both physically and mentally. I try to work out every day (key word is try...). I love seeing a personal trainer, practicing Pilates, and going for walks in the sun. I'm fully dependent on a rollator and sometimes use a wheelchair for long distances.

Chris Meyer

Chris MeyerMy name is Chris Meyer and was diagnosed with Friedreich's Ataxia (FA) when I was 17 years old. I started showing symptoms when I was fifteen. Currently, I'm 37 years old living in Chino Hills, California and have been confined to a wheelchair since the age of 22.

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