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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!


 

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!
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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. 
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FA Hangouts 7

The FARA Ambassador Program presents the seventh FA Hangout with the theme of: What Do You Do for Fun?
 
We have had several rounds of successful FA hangouts. We laughed, we connected, we hung out, we learned from and about each other...it was so fun! 
 
This month’s hangout is open to anyone with FA and a translator if needed. Tell us what you do for fun, why you love it, any practical ways you make it happen with FA or just get inspiration from others by learning what they do. Hangouts will be held Wednesday July 29 and Thursday July 30 (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like) at 7 & 9PM EST both days. More times will be added if needed. Email Mary at mary.bircher@gmail.com to sign up. 
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Kendall Harvey

“Que sera sera, whatever will be, will be,” has become my new motto since I was diagnosed withFriedreich’s Ataxia (FA) at the age of 25.
 
I grew up in Katy, Texas – a suburb of Houston. For as long as I can remember, I was always very active: swim team, cheerleading, softball, volleyball, track, and any other sport I could participate in. My childhood was a very happy time and I was just like every other kid my age.
 
I met the love of my life, Kyle, during my sophomore year of high school. We dated throughout high school and college. On the Fourth of July in 2008, he proposed to me on the ferris wheel at Niagara Falls. Naturally, we started planning the wedding right away. 
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Joseph Mullaney

Hello everyone, my name is Joseph Mullaney and I am extremely excited and honored to be apart of this program. I am 20 years old from Leominster, Massachusetts. I am a sophomore at Quinnipiac University in Hamden, Connecticut. At Quinnipiac, I am apart of a Fraternity, named Sigma Phi Epsilon, a member of the Student Government Association’s Executive Board as the Vice President for Public Relations, and a member of the Orientation Leadership Program, which helps welcome incoming students to Quinnipiac.
 
At home, I am one of four children from our parents, David and Brenda Mullaney. I have a twin brother named Sean, a 25 year old sister named Kaela, and a 26 year old brother named Ryan. Kaela and myself have FA and Sean and Ryan do not. However, Sean and Ryan always go out of their way to help Kaela and I, and will do anything to see this disease end. 
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