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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!


Grace Smith

GraceSmith 1Name: Grace Smith

Age: 10 years old

Where do you call home? Austin, Texas

Education: I am in 5th grade.

Who do you live with? I live with my Mom Susan, Dad Scott, sister Stella (7yrs) and our dog Benji.

What's a typical day for you? In a typical day, I go to school from 9:30 - 2:00. I have a shorter schedule than my classmates and sister, because I get easily fatigued. On weekends, I can only do one big outing or event before getting tired. But I love being at home with my family, and have learned how to conserve energy while also having fun. I go to bed at 8:30, which also helps me have enough energy to enjoy the next day.

How long have you known you are living with FA? I was diagnosed when I was 8 years old. The first thing the doctor discovered was a murmur in my heart that turned out to be Hypertrophic Obstructive Cardiomyopathy. At the time of my heart diagnosis, I did not have visible FA symptoms. About 10 months later though, I saw a neurologist because my balance and coordination had become pretty poor. After noticing that I also had high foot arches, no reflexes, and poor proprioception, he immediately thought I might have FA. It was then confirmed it with a genetic blood test. 

Troy Leslie

TroyLeslieMy name is Troy Leslie I am from Perth, Australia and I am 16 years old and my Mum noticed me being clumsy around 4 years of age, I was diagnosed with FA on my 12th birthday.

I can’t walk long distances and that really is disappointing but when walking goes away a wheelchair comes to play and I can do incredible things in a wheelchair such as basketball and Kyle Bryant Inspires me to do so.

Because I have FA, I play basketball in a wheelchair. So now a wheelchair or motorised scooter is the way I live and I am not ashamed of it no matter what others say about me and I will not hide it. 

Holly Franz

HollyFranz1Name: Holly Franz

Age: 22

Where do you call home? Bedford, New Hampshire

Education (degree(s): BS in Marketing from Southern New Hampshire University

How long have you known you are living with FA? After two years of being misdiagnosed, I was officially diagnosed with FA at age 11. 

Jake Hayner

JakeHayner1Name: Jake Hayner

Age: 34

Where do you call home? Onaway Michigan

Education (degree(s): Some college

What is your relationship status? Single

What's a typical day for you? Parents get me up, help me dress, prepare meals, help with daily needs. I have a personal assistant that takes me to physical therapy. On the days I don't go, I have a workout routine I do at home. I may sit in my hot tub, visit my sister next door, and sit in the sun. I stand up in my stand up chair and listen to music. I watch a little tv, play a little PS-4, an maybe go for a ride with my mom.

How long have you known you are living with FA? About 17 years.

Are there any others with FA in your family? My older sister also has FA. She is 36 and lives next door.

Describe your transition from walking to walker/wheelchair. It was a very hard transition. I started to fall a lot, twisting and hurting my legs and knees. My parents rearranged the furniture so I had furniture to hold on to. They put up bars along the walls to assist me. I fought the wheelchair as long as I could, until I could no longer get around without it. 

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. 

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