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FARAFARA Cure FA

Mary Bircher

I’m 28 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!
 
When I was diagnosed as a kid, I didn’t understand. As I got older, I felt doomed. I made the mistake of believing everything I saw on the internet. I went to my first NAF meeting when I was a senior in high school and it really changed my perspective. I wasn’t embarrassed anymore and I saw that the future actually had possibilities. I had to start using a scooter when I went to college, but the transition was not hard because really…walking around a campus would have been miserable! I wasn’t giving up; I was opening up a whole new world for myself.
 
Since then I’ve done some cool things: I worked in Disney World, I spent a summer in Italy, traveled all over Europe, and lived near London for a year! I know it made my dad nervous to have me on another continent, but I’m glad I had the opportunity.
 
I would never have done these things without my supportive dad and boyfriend, and a lot of other people along the way. They don’t look at me and think “FA” and for that I am grateful. I am just “Mary.” I do things without thinking about FA too much. Sometimes I fail, and that’s OK because I was given a chance.
 
I don’t poke the FA bear and it doesn’t poke me back (too hard!), but I want to be proactive. I don’t want to sit back and watch FA take things from me and my friends; I want to be involved and informed. I want to surround myself with other FA patients who are doing something to further a cure. A cure would be wonderful, but the drive and hope these people have is possibly even better, and I can’t wait to be a part of it!
 
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About the Author

The FARA Ambassador Program

The 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 a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
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.

 

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