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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 - May 2019

May teen Hangout 2019Join 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.

May's hangout will be led by FARA Ambassador Sam Bridgman and we will be joined by FARA's In-House Council/Advocate Brigid Brennan.

The theme: All the way we advocate: With friends and family, in your community, with your doctor, with politicians. How do you advocate? Tell us and learn what others do. It is just a relaxed conversation...the theme gets us going, but we definitely don't stick to it!

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Osama Aweek

OsamaHello, my name is Osama Aweek and I am a FARA ambassador! I was diagnosed when I was 11 and now I'm 18, I'll be 19 on April 16th, 2019. I'm from Tripoli, Lebanon (Asia). I failed grade 8 in my school because I was absent 75% of the time and the school wasn't very helpful. They didn't give me more time in tests or more time to study. I had to go to another city, a 3h drive once a week at least to see doctors, I met every doctor in Lebanon. Shortly after my diagnoses and I was diagnosed with cardiomyopathy and scoliosis.

The first few years after my diagnoses I couldn't get along with my disease. I was bullied for the way I looked or how I walked, but here I am today, a SURVIVOR. I couldn't tell anyone what was wrong at school till the end of grade 10, 4 years after my diagnoses. I decided to spread awareness then and I did a presentation about FA at the end of grade 10.

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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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