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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:

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!


Kolby Draper

Kolby Draper 2Name: Kolby Draper

Age: 23

Where do you call home? I live in a small town in central Florida named Bartow.

Education/Degree(s); What is a current goal you have with your education? How will FA add to your future[career]? I currently only have a high school diploma, I went to Welch College in Nashville right after graduating but had a fall which resulted in a knee injury so I had to come home and could not complete any classes there. I have taken a few classes locally when I have been able to. I would love to and maybe one day plan to get a degree in Theology and another in Architecture, combining them to plant churches, build homes, orphanages, schools, and hospitals both locally and abroad. FA is holding me back from that but if (scratch that, when) a cure is found, that's what I want to do long term.

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Read more: Kolby Draper

Marion Brossier

MarionName: Marion Brossier

Age: 24

Where do you call home? Bordeaux, France

Education: I have a degree in corporate management with a concentration in finance [STG (Science Technique et Gestion) option CFE (Comptabilité et Finances des Entreprises)], a license in trilingual communications [BTS (Brevet de Technicien Supérieur) AM (Assistante de Manager)], a certificate in accounting and administration [ASCA (ASsistante de Comptabilité et d'Administration)], and a certificate in European studies [PCIE (Passeport de Compétence Informatique Européen)].

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Slim's Journey 2018

Slim collageSlim's Journey 5k run/2.5k walk was held in Warrenton, MO at College United Methodist Church on September 22nd, 2018 for its 7th and final event. Julie Myers and 6 other board members, Jeff Myers, Jodi Owens, Nicole Hardey, Kelly Hill, Gina Licameli and Kristi Zinn, worked hard in organizing this event to success. The volunteers at the booths, the setting up/taking down of signs, the finish line, the firefighters, the speakers, the photographer, the homemade breakfast for all the racers....all of it. It was amazing and very well put together! It takes time, money, dedication, success and failures to make an event like this come to fruition.

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Alison Avery

Alison 2Name: Alison Avery

Age: I am 24

Where do you call home? I was born and raised in Tampa, FL. I've lived in North Carolina and New York City, but currently call Tampa home.

Education: I graduated from Elon University in May of 2016 with a bachelor's degree in Human Services Studies and minors in Business Administration, Psychology and Early Childhood Education.

How long have you known you are living with FA? I first had symptoms of FA when I was 15 and in high school. We were able to diagnose it very quickly because my sister also has FA and was diagnosed prior to me.

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