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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!


 

Andrew (Andy) Sorter

Andrew SorterName: Andrew (Andy) Sorter

Age: 25

Where do you call home? Casper, Wyoming

Education: Graduated high school with some college

What is your relationship status? Who do you live with? I am single and I live with my parents.

What's a typical day for you? A typical day for me is- depending on the day- sleeping in and enjoying time to myself, going to work at the sporting goods store I work in or going to therapy.

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Read more: Andrew (Andy) Sorter

Teen Hangout - January 2019

January 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.

The theme will be: How do you want what you do to reflect what you value in 2019? For example: Do you value adventures? If so, what is your next adventure? Is being kind important to you? If so, what does that look like to you, smiling at others more often, etc? We will also talk about what living our values means for our group.

Read more: Teen Hangout - January 2019

January FA Hangout 2019

January HangoutBrittany Sommerfield and Noelle Bouchard are going to host this month's hangout. The topic for discussion is what are your plans for 2019.

When: January 29th & 30th. Hangouts will be held on the last consecutive Tuesday and Wednesday of the month, (except for holidays and the like) at 8-9:30pm EST each of the two days.

How: Email fahangouts@gmail.com to sign up or ask questions. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately, all our hangouts have been filling up. If you signed up and can't make it, please let us know so we can give the slot to someone else.

Read more: January FA Hangout 2019

The Venter's

CheneName Chene Venter

Age 19

Where do you call home? Western Cape, South Africa

Education (degree(s): I am of high-school age, and interested in becoming a book editor (proofreader).

What is your relationship status? I live with my mom and my twin sister. I have two more sisters and a brother.

What's a typical day for you? A typical day for me is rolling down to the beach with my twin sister and my dog. I also like to exercise during the day (yoga, cycling). My sister and I also have parallel walking bars.

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Read more: The Venter's

Brittany Sommerfield

brittany sommerfieldHello, my name is Brittany Sommerfield and I am a FARA ambassador. I was diagnosed when I was 13 and I am 24 as of November 2018. I am a Canadian and a Winnipeger.

At first, when I was diagnosed I tried to ignore the reality. If anyone asked if I was sick or why I was so clumsy I would tell them there was nothing. It wasn't until after grade 11, 5 years later, until I accepted the illness, I would tell people what was wrong- I wouldn't keep it a secret and I would help to spread awareness I decided

I organized a fundraiser at my high-school, my friends all helped and we raised a whopping $6,000 Canadian. I also held two socials (which are a Manitoba thing but it is pretty much a fundraiser/party). So far I have attended five different ataxia conference; I have also participated in multiple trials in UCLA and Atlanta Georgia (you can read my patient perspective to learn more, click here.

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Read more: Brittany Sommerfield
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