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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.

RJ Mercure

RJ MecureName: RJ Mercure

Age: 29

Where do you call home? Just recently moved to Ashburn Virginia, but would call home Chesapeake Virginia.

Education: Graduated high school in 2004, then went to Woodrow for business, came home in 2009 and found nothing, even had a job coach. So I became a bum at home. I watched animal planet every day and decided to apply to my local zoo ( the Virginia Zoo ) as a keeper aide and got it!! From 2010-2015, best time of my life!!

What's a typical day for you? Need a new job/friends for new area.

How long have you known you are living with FA? Since I was 12, the 7th grade.

Read more: RJ Mercure

Noelle Bouchard

NoelleName: Noelle Bouchard

Age: 28

Where do you call home? Maine

Education (degree(s): I graduated high school in 2006. I started college in 2012 and I am still attending. I am going part-time, so it is going to take me a little bit longer. For the first two years, I was it going for general studies, but recently I have decided to go for behavioral health.

What is your relationship status? Who do you live with? I have had a few long term, serious relationships while having FA. But right now I am single, and I live in an apartment under my mom, dad, two dogs, and my sister Allison. I also have a pet rat in my apartment with me. And no, she does not run loose, she lives in a cage. ;) 

Read more: Noelle Bouchard

Alyx Holliday

AlyxHHello everyone, my name is Alyx Holliday. I was diagnosed with FA when I was five, so I don’t remember much about it. My mom said it’s a good thing I don’t remember much because what I had to go through was a lot. When I was younger I used to play baseball. I played for 17 seasons I was 14 years old when I had to stop to have the spinal fusion surgery I’m sure some of you have had it too. My adaptive P.E. teacher and my physical therapist taught me a lot of great ways to keep myself strong for all the upcoming trials.

My senior year I decided to get more involved, so I did the Mr. Salem Pageant. I had to learn two dance routines and I had to come up with a talent, so I decided to do a comedy routine. In June I went to prom and had a grand time dancing the night away. I learned that I really love to dance. Also in June I graduated with honors from my High School and I got to walk across the stage. 

Read more: Alyx Holliday

Mary Bircher

I’m 29 and was diagnosed with FA when I was 9. (That’s probably my most used sentence ever!)
 
I have brown hair and green eyes and I am 5 foot 2 inches tall (you didn’t want to know this?)…
 
I live in Durham, North Carolina with my boyfriend, Greg, and our crazy corgi, Finn. I have a BA in English and an MA in Victorian literature. (Nerd?) I have a handcycle and I do exercise a bit, but I’m not huge into athletics.
 
I don’t have an interesting backstory, I’m pretty typical. My diagnosis was a pretty smooth process. My biggest issue is scoliosis, which I finally got fixed in 2014!
Read more: Mary Bircher

Mandy Davis

One of my favorite quotes, “In three words I can sum up everything I've learned about life: it goes on.” by Robert Frost, is something I am reminded of, often.
 
I have had a typical life – I have an amazing younger sister (a great brother-in-law and the best new nephew), great parents and very supportive extended family and friends, from a small Midwestern town. I have always been an “old soul,” a quiet one who calms and listens but stands up for my beliefs, individuals and roots for the underdog. I am still typical in a lot of ways, but life happens and I like to think I am more unique than I imagined I would be. 
Read more: Mandy Davis
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