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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!


Chrissy Thomas

ChrissyThomas1Name: Chrissy Thomas

Age: 30

Where do you call home? I grew up in Atlanta, Georgia and now live in Greenville, South Carolina

Education: B.S. in Family and Consumer Science from the University of Georgia (Major: Child and Family Development)

Who do you live with? My husband, Nick

What's a typical day for you? My days are never routine, but typically I workout every morning. My husband Nick and I own a food truck and we work at least five days a week for lunch and dinner shifts. I work the window, and help with anything else Nick needs. I am usually exhausted after these shifts, but I try to keep a good balance in my life of hanging out with friends and family. 

Carla Poletti

CarlaPoletti1Name: Carla Poletti

Age: I am 48 years young!

Where do you call home? I live in Paragould, Arkansas. This is in the northeast corner of Arkansas and about 70 miles west of Memphis, Tennessee. I was born and raised in Arkansas. The house that I live in is fully accessible and I am able to do pretty much anything. Even the kitchen counters, stove and sink are lowered so I am able to cook safely.

Education (degree(s): I graduated high school way back in 1986. I just can't hardly believe it has been 30 years! After that I went to a VoTech school where I earned a diploma in Data processing.

During my high school years I had plans of going to college and hopefully becoming something "successful." When I received my diagnosis the beginning of my senior year, I was scared, and really didn't know how much time I had left, so I chose vo-tech school. Looking back now, I know that I could have done college, but I really do feel like my life has been "successful." I have had many wonderful opportunities that have come my way regardless, and even because of my disability. I have had great jobs, served in my community, been active in my church and Ministry, been actively involved with MDA, have a happy marriage, am a daughter, sister, aunt, and have lots of great friends. I am generally healthy and very happy. No regrets! I am blessed indeed! 

Laura Bishop

LauraBishop1Name: Laura Bishop

Age: 23 years old

Where do you call home? Bournemouth, England

Education (degree(s): I have a diploma in child psychology and I also have a blog website involving FA.

What is your relationship status? Who do you live with? I'm in a relationship. I live with my mum.

How long have you known you are living with FA? (When and how were you diagnosed?): I was diagnosed at age 15, my diagnoses went on since I was 13 because the specialists believed my walking etc was due to scoliosis.

Are there any others with FA in your family? No. My family and I had never even heard of it before. 

Eric Bermudez

EricBermudez1Name: Eric Bermudez

Age: I'm 52 years young!

Where do you call home? The Garlic capitol... Gilroy, California

Education (degree(s): At a small community college here in Gilroy, I majored in business & due to the progression of my FA I graduated early with a certificate of completion in micro-computer applications. I not only consider myself a 'computer geek' now, BUT I can use all the skills I learned to be financially free in my own home-based business.

What is your relationship status? Do you have children? I've been the 'D' word & single for the past 28 years or so. I will marry the woman of my dreams 1 day!?!?! I do have one beautiful daughter who helps take care of me & has blessed me with 2 fun filled grand babies.

How long have you known you are living with FA? (When and how were you diagnosed?) My Mom said she noticed me tripping over my own feet & being clumsy like spilling my drink grabbing for it at the dinner table around age 5. There was plenty of confusion cause the blood test to confirm the FA diagnosis was not available yet. I think I finally got diagnosed around 14-16 years old. 

Keith OBrien

KeithOBrien1Name: Keith OBrien

Age: 17

Where do you call home? Tom's River, NJ

Education: I'll graduate TR High School East in 2016

What’s a typical day for you? A typical day for me is waking up, going to school, coming home, and practicing guitar until I go to sleep. Sometimes I'll watch TV or a Movie, I don't listen to music a lot because I'm usually too busy practicing.

How long have you known you are living with FA? I've known about my FA since around 4th grade.

Are there any others with FA in your family? My older brother has FA, we're the only two.

Describe an adaptation you have had to make due to living with FA. I've not yet had to use a mobility device, but I have had to make changes in my life. For example, balancing while showering has become difficult, so we've installed a few handles in the shower. Beyond that I try not to make accommodations, I like to push myself to be as free from assistance as I can possibly be. 

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