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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!


 

May FA Hangout 2019

May HangoutThis month's topic is, "What You're Watching? Tv, Movies, Netflix, Whatever." It will be led by Brittany and Morgan. Come hang out!

When: Join us on May 21st or the 22nd at 8-9:30pm. 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.

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Justin Bolinger

Justin BGreetings from the great state of Montana. My name is Justin Bolinger, I am 40 years old and have Friedreich's Ataxia. My story begins in 1997 which was my first year of college. This is the year that I began to notice that my coordination was off. I struggled to run. This had never been an issue growing up. Throughout my school years, I was on the football and wrestling teams and an active member of the FFA. My summers involved working on the Farm and stacking hay. I was extremely strong. But in 1997 I was struggling to do things that came so easy before. In March of 2002, I was diagnosed with Friedreich's Ataxia. I was told there were no treatments and that I would be fully wheelchair bound in ten years or less.

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Carly Magnuson

Carly MHi, I'm Carly Magnuson and I live in Deerfield Beach, sunny south Florida. I was diagnosed when I was 7 and I'm 28 now. I'm a Christian. I am 1 out of 4 daughters, and the only lucky one with FA. I played T-ball, a little volleyball, swam on the Deerfield Beach Dolphins swim team, and rode horses for hippotherapy, while FA was unknown to me; I thought I had a slight balance problem until I was 11 I found out the grim truth. I had spinal fusion back surgery in 2007 and became a full-time wheelchair user shortly after that. I graduated from Deerfield Beach high school in 2009.

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Rhea Hoffman

Rhea HoffmanName – Rhea Hoffman

Age – 31

Where do you call home? Milwaukee, WI

Education – High School Diploma and a few years of college for Criminal Justice, Fire Science & Psychology.

What is your relationship status? Single, no kids. Live with my older brother & sister-in-law.

What is a typical day for you? Work full time, commute time is about 30 mins each way. We always have a lot of family gatherings during the weekends.

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Kaity Ratcliff

Kaity 2Name: Kaity Ratcliff

Age: 17

Where do you call home? Prairieville, Louisiana

What is your current goal you have with education? I plan to graduate college to become an engineer.

Who do you live with? My parents and my older sister.

What's a typical day for you? I go to school, watch YouTube, listen to music, and do homework.

How long have you known you are living with FA? I was diagnosed 2 years ago.

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