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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!


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. ;) 

Jonathan Zilles

JonZilles1Name: Jonathan Zilles

Age: 37 on December 31st!

Where do you call home? Atlanta, GA

Education: BA in psychology from Auburn University

How long have you known you are living with FA? I was diagnosed at age 11. My parents noticed I had a funny gait so we went to several neurologists. They were not sure if it was FA or another form of ataxia, as the FA gene had not been discovered yet in 1990.

Are there any others with FA in your family? No, but my family took part in a research study leading up to the FRDA gene discovery. Genetic testing results showed both of my sisters are carriers. 

Rock Around the Clock for FARA

RockAroundtheClock1

On November 28th, the FA community in Rhode Island pulled out their dancing shoes. It was the first Rock around the Clock for FARA and I don’t think it will be the last! From noon to midnight, over 25 musical performers kept the crowd singing, dancing, and tapping to the beat. For twelve hours there was always music to be heard across three rooms at Studio One RI in Lincoln, RI. There were small bands, big bands, DJ’s, singers, even karaoke! 

2015 Ace for a Cure

2015Ace1The Ace for the Cure event is something our family looks forward to every year. Our boys, Gavin and Evan, just adore John Isner. They watch him on TV and love seeing him play in person.

On Sunday December 6th, the day began with a delicious lunch, outside in the beautiful 75 degree Florida Sunshine. Once we finished eating, it was onto the auction table. Gavin immediately had to bid on Sandy's famous Shortbread Cookies! He watched the auction table like a hawk and made sure to let me know anytime we were outbid. He was not going to lose out on those cookies! There were many other items as well, gift baskets, trips, experiences and lots of sports memorabilia. There was something for everyone! 

 

Molly Lawson

MollyLawson1Name: Molly Lawson

Age: 19

Where do you call home? Arizona

Education (degree(s): I'm sophomore in college and trying to get my doctorate degree

What is your relationship status? Who do you live with? I have been going out with my boyfriend for 7 months, but we don't live together. I live with three good girl friends by our college campus.

What's a typical day for you? My routine revolves around getting to class. I get up in the morning, get myself ready, and bus to school. My evening are more fun when I get to see my friends and go out.

How long have you known you are living with FA? I was diagnosed when I was 10. 

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