Name: Alison Love
Age: 46 years
Where do you call home? Paisley, Scotland
Education degree(s): BA (hons) Community and Youth Work
What is your relationship status? I am single (divorced) living on my own
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.
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 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!
Name: Alison Love
Age: 46 years
Where do you call home? Paisley, Scotland
Education degree(s): BA (hons) Community and Youth Work
What is your relationship status? I am single (divorced) living on my own
Join 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
RJ Mercure and Allie Bouchard are going to host this month's hangout. The topic for discussion is how does cold weather affect your FA. Most of us, not all (lucky), have to deal with colder weather, snow, and ice. Come talk about it. We would love to meet you.
Name: Michelle Huebner Bodine
Age: 40
Where do you call home? Portland, Oregon & Vancouver, Washington
Education: I finished my bachelor's degree while working full time.
Who do you live with? I'm married and have a wonderful son, just turning 16!
Hello, 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).
Read more: Patient Perspective: Brittany's Experience Participating in Research Studies