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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 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!

Michelle Huebner Bodine

MichelleName: Michelle Huebner Bodine

Age: 40

Where do you call home? Portland, Oregon & Vancouver, Washington

Education: I finished my bachelor's degree while working full time.

Who do you live with? I'm married and have a wonderful son, just turning 16!

Read more: Michelle Huebner Bodine

Annika Venter

Annika Venter 2Name: Annika Venter

Age: 18

Where do you call home? I currently live in Cape Town South Africa.

Education: I am busy with my last year homeschooling.

What is your relationship status? I am single. I live with my twin sister and my mom.

What's a typical day for you? My day is very simple, I normally do school work, exercise, take my dog to the beach, go to physio and visit family and friends who live nearby.

Read more: Annika Venter

Kailey Newcity

Kailey Newcity copyName: Kailey Newcity

Age: 27

Where do you call home? Lake Charles, Louisiana

Education (degree(s): Bachelor of Science in Medical Assisting, but I cannot work in the field. I work as a check out receptionist (sit down job) at an Orthopedic Clinic part-time.

What is your relationship status? I have a boyfriend of 5 years who I live with. No kids.

What's a typical day for you? I work three days a week, do physical therapy twice a week, & see a chiropractor once a week.

How long have you known you are living with FA? I started having obvious symptoms 4 years ago & was misdiagnosed with Charcot Marie Tooth Disease in 2015. I found in February of this year that I actually have FA.

Read more: Kailey Newcity

Jade Brim

Jade BrimName Jade Brim

Age 28

Where do you call home? I live in Daytona Beach. FL.

Education (degree(s): I have a Master's in teaching. FA has led me many great places that have laid the foundation for my future. FA led me to the doctor's office where I met my husband. FA led me to an amazing career teaching math online.

What is your relationship status? I am happily married.

Read more: Jade Brim

Madelyn Frederick - MTC

MadelynName Madelyn Frederick

Age 19

Where do you call home? I was born and raised in Dallas, Texas and still live there.

Education: Ever since I was little I had dreams of becoming a teacher. When I was diagnosed with FA, I didn't think I would be able to achieve that dream. I knew it would be physically and mentally difficult but I am gonna do it. I am currently attending Collin College to get my degree in education.

What is your relationship status? I am currently a single, college student who lives with her parents and brother. I have an aspiring YouTube channel and am way too obsessed with blue bell peanut butter cookie dough ice cream. I have 2 older sisters and they both have some very adorable children. My brother is a senior in high school and wants to play baseball in college.

Read more: Madelyn Frederick - MTC
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