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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 - November 2018

November 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

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Patient Perspective: Brittany's Experience Participating in Research Studies

Patient Perspective Collage 2Hello, my name is Brittany Sommerfield and I am 24 years old. When I was 11 years old I suffered from a Crohn's Disease flare up and was ultimately hospitalized for a month. Because I was bedridden for weeks my movements had become slower and unsteady. When physical therapy said I wasn't getting better after some months, I was referred to a neurologist. At this time as I was so young, I really didn't understand what was truly going on. Eventually, 'ataxia' was brought up to my parents and they started to look at their middle daughter (my older sister)- Chelsey; who was displaying similar symptoms at this time. Within a year, many tests were done and blood work was sent across the country. Then, just after I turned 13, in March 2007, my sister and I were given the genetically confirmed diagnosis of Friedreich's Ataxia (FA).

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Read more: Patient Perspective: Brittany's Experience Participating in Research Studies

Annika Venter

Annika Venter 2Name: Annika Venter

Age: 18

Where do you call home? I currently live in Cape Town South Africa.

Education: I am busy with my last year homeschooling.

What is your relationship status? I am single. I live with my twin sister and my mom.

What's a typical day for you? My day is very simple, I normally do school work, exercise, take my dog to the beach, go to physio and visit family and friends who live nearby.

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