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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.
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 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!
Hello everyone, my name is Alyx Holliday. I was diagnosed with FA when I was five, so I don’t remember much about it. My mom said it’s a good thing I don’t remember much because what I had to go through was a lot. When I was younger I used to play baseball. I played for 17 seasons I was 14 years old when I had to stop to have the spinal fusion surgery I’m sure some of you have had it too. My adaptive P.E. teacher and my physical therapist taught me a lot of great ways to keep myself strong for all the upcoming trials.
My senior year I decided to get more involved, so I did the Mr. Salem Pageant. I had to learn two dance routines and I had to come up with a talent, so I decided to do a comedy routine. In June I went to prom and had a grand time dancing the night away. I learned that I really love to dance. Also in June I graduated with honors from my High School and I got to walk across the stage.