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FARAFARA Cure FA

Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


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. 

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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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Tiffany Rose Gambill

TiffanyGambill1Name: Hi, I’m Tiffany Rose Gambill.

Age: I am 25, I’ll be 26 on December 21st.

Where do you call home? I live in Bridgewater, Massachusetts, currently with my parents, but we are building a wheelchair friendly apartment onto the house, so that will be my little humble abode.

Education (degree(s): I graduated The University of Massachusetts Dartmouth with a bachelor’s degree in Women Studies. While in college I also went to a community college near home where I got certified in Sign Language I-V and certification in Veterinary Assistance. Both certificates, of which I never used. I also did the Bridgewater Citizens Police Academy, which was very interesting, I learned a lot, bonus I got to see 3 people tazed! After college I did many trainings in Domestic Violence, which led to a semester in Washington DC at The Washington Center and an internship at Becky’s Fund which helped with victims of DV. When I came home I interned at the Plymouth County District Attorney’s office. Then in September of 2014 I got a job in my town at a company that trades precious metals around the world. I have been there a little over a year. I work part time, which is really helpful for my energy levels. At work I do a lot of filing, data entry and now I help also in the HR department. So nothing to do with my education background, but they continue to pay me so I’m not complaining! I do still love to continue my education, knowledge is a powerful recourse for everything so why wouldn’t you want to learn as much as possible? 

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Linda Johnson

LindaJohnson1Name: Linda Johnson

Age: 53

Where do you call home? Cazenovia, NY (Central New York)

Education (degree(s): BS Industrial Engineering

What is your relationship status? Do you have children? I am a wife and mom of two kids, ages 21 and 18.

What's a typical day for you? (i.e. daily routine, employment, student, stay at home parent, etc…) A typical weekday for me includes exercising, showering, feeding the animals (dog, cat, rabbit, fish), mowing the lawn (unless it’s covered in snow!), cooking, laundry, sending a care package to the kids, organizing/cleaning (I think I’m a little OCD!) … typical stay at home stuff! There is no typical weekend for me … traveling, dinner with friends, company over, etc. … it’s all good! Whether it’s a weekday or weekend, there is always time for a 25-minute nap followed by a cup of coffee! :)

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Rachel Conger

RachelConger1Name: Rachel Conger

Age: 19

Where do you call home? Wilmington, Ohio

Education (degree(s): I graduated from Wilmington High School in 2014. I'll be starting art classes soon.

What is your relationship status? I'm happily engaged to my love, Eric. April 30th 2016 is the big day!

What's a typical day for you? Wake up and do what needs to be done.  Add a comment

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