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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.

Erin Pieper

Erin PieperMy name is Erin Pieper. I am a 30-year-old mama to my handsome 6-year-old son, Elijah.

I live in St. Louis, Missouri and obtained a Bachelor's degree in Psychology/Sociology in 2010. I work as an Entrepreneur for a wine company called viaONEHOPE. Amongst setting up wine tasting events, I blog, participate in research trials for FA, recently became an Ambassador for FARA, pursuing hobbies into something more and most importantly, being a mom.

I was diagnosed with FA in 2010. My symptoms were pretty subtle for the years leading up to diagnosis, but really took a fast turn for the worse during my pregnancy. Even though symptoms were hardly noticeable at first, I knew something was 'off'. Just walking to and from my car was exhausting. I couldn't run up and down the stairs anymore. I had to be more cautious with each step.

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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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Vlad Ayriyan

VladAyriyanHello, my name is Vlad Ayriyan, I am 24 years old. I was diagnosed when I was 9 years old and was wheelchair bound at the age of 16. I live in the best city in the world, San Diego. I was born in Armenia and that is where my family is from. I used to love playing sports, especially basketball but as the disease progressed I had to adapt to not being able to play the sport that I love. I had to adapt to a new way of my love for sports by studying the game.

I have a sister who is 19 years old and very supportive of me. She is unaffected by the disease but she is still a carrier. Knowing this definitely, helps me want to put an end to this. I do not want to only do this for myself but for those affected by this disease, along with their family and the people who support them.

This disease taught me a lot of lessons about life, but I think I have learned enough and it is time to put an end to this and find a cure. 

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Jacob Ferguson

JacobFergusonMy name is Jacob Ferguson. I am 22 years old and live in Montgomery, Texas with my family, including my 17 year old brother who also has FA. I am working on a business degree at LoneStar College and Sam Houston State University. I love to work out and work with a trainer at our local gym a few days a week.

I am always up for adventure. We just returned from a trip to Mexico. We had a blast! We were able to scuba dive in the resort dive pool, parasail over the ocean, and deep sea fishing all for the first time!

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Matt Lafleur

MattLafleurName: Matthew Lafleur

Age: 31

Where do you call home? Opelousas, Louisiana

Education (degree[s]): BA in English, MA in general mental health counseling

What's a typical day for you? I live next-door to my family’s company where I work with family nearby, so I live on my own and am able to go to work next door on weekdays. Most days, I write for the blog I contribute to about being a (bad) Catholic dealing with FA. The blog is called Sick Pilgrim. Less often, I like to volunteer as a counselor in my area.

How long have you known you are living with FA? About 20 years.

Are there any others with FA in your family? My younger sister also has FA. She is 29. She and her husband have two incredible kids, and they live next door.

Describe your transition from walking to walker/wheelchair. My symptoms became apparent when I was in junior high/high school, so at a time when I most wanted to just fit in with everyone else, my clumsy walk and poor coordination made me stick out. I refused to accept the help from a wheelchair in high school, mostly because I was hardheaded. In college, I realized that there were no walls I could hold onto for support when I had to cross campus to get to class, so I finally agreed to use a wheelchair. And what really surprised me was that being in a wheelchair, instead of imprisoning me, gave me a small and newfound sense of freedom - no longer was I the one everyone had to wait for; no longer was I consistently putting all my strength into remaining upright. I would have scoffed at this idea, but found it to be absolutely true - that sometimes accepting help can make us more independent, not less. 

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