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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.

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.

Xhesika Peza

PezaI am Xhesika Peza 24 years old diagnosed with FA before 5 years. I live in Albania, a small country where living with a disability is quite difficult. Firstly, when I was diagnosed with FA I thought that I was alone.

Kailey Newcity

NewcityMy name is Kailey Newcity, I'm 27 & I live in Lake Charles, Louisiana. I was diagnosed with FA in 2015 after originally being (mis)diagnosed with Charcot Marie Tooth Disease, as many symptoms do overlap. My diagnosis story is a long one, I went through about two years of testing at Baylor Neurology in Houston, Texas. Everything from EMG's, MRI's, extensive blood work, a spinal tap, & even a nerve biopsy. Now that I have a definite diagnosis through a genetic panel blood test I can find my place in this amazing community, learn & help spread awareness & eventually, like all of us, hope to find a cure.

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