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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!


 

Alison Avery

Alison 2Name: Alison Avery

Age: I am 24

Where do you call home? I was born and raised in Tampa, FL. I've lived in North Carolina and New York City, but currently call Tampa home.

Education: I graduated from Elon University in May of 2016 with a bachelor's degree in Human Services Studies and minors in Business Administration, Psychology and Early Childhood Education.

How long have you known you are living with FA? I first had symptoms of FA when I was 15 and in high school. We were able to diagnose it very quickly because my sister also has FA and was diagnosed prior to me.

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Read more: Alison Avery

"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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Read more: "The Ataxian" Screening

Naomi Houghton

NaomiName Naomi Houghton

Age 24

Where do you call home? British Columbia, Canada

Education: I have a diploma in Occupational Therapist Assistant & Physiotherapist Assistant, FA will ultimately render me unable to perform my job as a rehabilitation assistant, but for now it has allowed me to build better rapport with my clients. I can now relate to their struggles and offer encouragement to them from a genuinely understanding place.

What is your relationship status? I live with my two best friends and greatest supports: Michael, my common-law partner, and Memphis, my Teacup Yorkie.

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Read more: Naomi Houghton

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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Read more: FA Hangout September 2018
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