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FARAFARA Cure FA

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: info@cureFA.org.

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!


 

Teen Hangout - October 2018

October Teen HangoutJoin the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

The theme will be: What are you doing? Are you wearing a costume? Does your ataxia affect how you celebrate? And anything else Halloween you want to talk about! This hangout will be hosted by current college attendee Kyle Waterman.

When: Thursday, October 25th 8-9PM ET (the hangout opens 30 minutes early to try to work out technical issues, please remember we are volunteers, not IT professionals, come early if you've never attended a hangout on WebEx before).

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Read more: Teen Hangout - October 2018

Madelyn Frederick

MadelynName Madelyn Frederick

Age 19

Where do you call home? I was born and raised in Dallas, Texas and still live there.

Education: Ever since I was little I had dreams of becoming a teacher. When I was diagnosed with FA, I didn't think I would be able to achieve that dream. I knew it would be physically and mentally difficult but I am gonna do it. I am currently attending Collin College to get my degree in education.

What is your relationship status? I am currently a single, college student who lives with her parents and brother. I have an aspiring YouTube channel and am way too obsessed with blue bell peanut butter cookie dough ice cream. I have 2 older sisters and they both have some very adorable children. My brother is a senior in high school and wants to play baseball in college.

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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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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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