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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!


Lesley Eertink

Lesley 5Name Lesley Eertink.

Age: I am 32, but mentally feel like 25 

Where do you call home? Amsterdam, The Netherlands. (Europe)

Education: Masters in Law.

What is your relationship status? Do you have children? I am single and living on my own. I have no children. Still waiting for the perfect match! Still no luck in that though.

What's a typical day for you? My day always starts with a healthy breakfast. I work 4 days a week as a company lawyer for the Dutch government from Monday till Thursday. Besides that, I exercise 5 days a week to keep my body in shape. Also because I am a bit vain. After work and exercise, I prepare a nice and healthy meal for myself. And when there is time left I have time for my addiction...Netflix.

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Geoffrey J Fox

Geoffrey FoxName: Geoffrey J Fox

Age: 39 years old

Where do you call home? Northern Michigan

What is your relationship status? I am a single guy with no children. I live alone with my dog, but my mom and stepdad live a couple houses over when I need help.

What's a typical day for you? My days are about creation. I have an undeniable urge to create. I guess the simple answer would be I spend my days writing stories, poetry or scoring songs.

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Andrew (Andy) Sorter

Andrew SorterName: Andrew (Andy) Sorter

Age: 25

Where do you call home? Casper, Wyoming

Education: Graduated high school with some college

What is your relationship status? Who do you live with? I am single and I live with my parents.

What's a typical day for you? A typical day for me is- depending on the day- sleeping in and enjoying time to myself, going to work at the sporting goods store I work in or going to therapy.

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The Venter's

CheneName Chene Venter

Age 19

Where do you call home? Western Cape, South Africa

Education (degree(s): I am of high-school age, and interested in becoming a book editor (proofreader).

What is your relationship status? I live with my mom and my twin sister. I have two more sisters and a brother.

What's a typical day for you? A typical day for me is rolling down to the beach with my twin sister and my dog. I also like to exercise during the day (yoga, cycling). My sister and I also have parallel walking bars.

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Barry Risinger

Barry RisingerName: Barry Risinger jr

Age: 37

Where do you call home? The first state capital of Ohio.

Education (degree(s): G.E.D., 3 years of schooling for different art degrees.

What is your relationship status? I'm currently in a relationship with another FA'er. I have 15yr old daughter who has no sign of having FA. I currently share a place with my mom.

What's a typical day for you? I normally wake up take my vitamins and medicine then make a smoothie. After that, my day is filled with drawing, playing games, listening to music, and content creation.

How long have you known you are living with FA? It took me 10 years to get a definite diagnosis. I have had symptoms since I was 13.

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