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FARAFARA Cure FA

FARA Ambassador Program

The 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.

Kyle Bryant

Kyle BryantKyle Bryant is the founder and director of the bicycle ride fundraiser, rideATAXIA for FARA. rideATAXIA currently has 6 locations and has raised over $7 million for FA research since 2007. Despite his diagnosis of FA at the age of 17, Kyle has completed numerous long-distance bike rides including "The World's Toughest Bike Race" - Race Across America in 2010 as part of 4 man Team FARA.

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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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Scarlett Drews

Scarlett DrewsMy name is Scarlett. I'm 22 years old and I live with Friedreich's Ataxia. I was diagnosed at age 14 and I didn't start having symptoms until I was nearly 20. My story is quite unique because I was diagnosed years before symptoms appeared. When I was 10, I had foot surgery and didn't heal very fast. Because of this, the doctors suspected a neurological disorder. Then 4 years later, I met with the right neurologist who identified FA right away.

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Allison Bouchard

Allison BHey! My name is Allison Bouchard and I am 23 years old living in Bowdoin, ME. I was diagnosed with FA in 2006 when I was 11, after my sister Noelle was diagnosed about a year earlier. We both live together with our family, her boyfriend Matt, and our two dogs. I've been using a wheelchair since I was in high school. I was always a clumsy kid growing up, so my family wasn't too alarmed when I started showing symptoms until Noelle (then 16) did. I can remember feeling fatigued during gym class as far back as in 1st or 2nd grade.

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Alex Bode

Alex Bode 2Hey everyone, my name is Alex Bode and I am 27 years old. I lived a pretty normal life until the age of 6 when my brother was diagnosed with Friedreich's Ataxia. Initially, we thought he was just a clumsy little kid, however, the day came when he was diagnosed with FA. Of course, we did not know that there was a 1 in 4 chance that I could have FA as well. Due to my mom's nerves, my clumsiness, and my mom's knowledge that cardiomyopathy is a side effect of FA, we took a trip to the cardiologist. Lucky us, we discovered that I have left ventricular cardiomyopathy. At the young age of 8, this news meant very little to me, but I soon began to realize how much this would truly affect my life.

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