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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 - June 2019

June 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.

June's hangout will be led by FARA Ambassador Kyle Waterman.

The theme: Hobbies. Tell us about yours and how you make it work with your ataxia or learn about a new one. It is just a relaxed conversation...the theme gets us going, but we definitely don't stick to it!

Read more: Teen Hangout - June 2019

Kelley White

Kelley Name: Kelley White

Age: 44

Where do you call home? Nashville, Tennessee

Education degree(s): After I graduated high school, I went to the Tennessee Rehabilitation Center. It's a school for people with different disabilities, anywhere from developmental to physical. I lived there for 10 months (went home some weekends). I earned a clerk/typist certificate. Then I went to work at Volunteer State Community College for almost 17 years.

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Read more: Kelley White

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.

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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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