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FARAFARA Cure FA

FARA Ambassador Program

The FARA Ambassadors is a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

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.

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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Read more: Slim's Journey 2018

"The Ataxian" Screening

ataxian collageThis past week, FARA partnered with the Bob Allison Ataxia Research Center (BAARC) at the University of Minnesota to screen The Ataxian. This event brought almost 200 people from the community together to screen the film, learn about Ataxia and participate in a panel discussion including Kyle Bryant and Dr. Christophe Lenglet, a University of Minnesota neuroscientist studying Friedreich's Ataxia.

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FA Hangout September 2018

FA musicThe FARA Ambassador Program presents an FA Hangout talking about: Live Music! Noelle and Brittany are leading the discussion. How's venue accessibility? How's your hearing? Let's talk! September 25 & 26!

At FA Hangouts we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every Hangout is open to anyone with FA and a translator if needed for hearing or speech difficulties. (Mark your calendars, FAHangouts will be the last consecutive Tuesday and Wednesday of the month, except for holidays and the like) at 8-9:30 PM EDT each of the three days.

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Teen Hangouts - September 2018

September 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. We are now hosting them on WebEx. If you had a hard time joining our Google Hangout, you aren't alone. We hope you'll try again on WebEx.

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.

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Read more: Teen Hangouts - September 2018
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