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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!


Laura Rose Ferrarone

LauraName: Laura Rose Ferrarone

Age: 29

Where do you call home? Rochester, NY

Who do you live with? I live alone in my own home, rented from my parents. I have help 24X7.

Kati Hook

KatiName: Kati Hook

Age: 35 years old

Where do you call home? I live in NW Indiana on my parent's farm. I have an apartment in the barn.

Education: I have an associates degree in Occupational Therapy. Through my internships, I learned tips and tricks that have helped me to maintain my independence.

What is your relationship status? Who do you live with? I am single, I live with my Frenchie, Mabel who keeps me very busy.

Osama Aweek

OsamaHello, my name is Osama Aweek and I am a FARA ambassador! I was diagnosed when I was 11 and now I'm 18, I'll be 19 on April 16th, 2019. I'm from Tripoli, Lebanon (Asia). I failed grade 8 in my school because I was absent 75% of the time and the school wasn't very helpful. They didn't give me more time in tests or more time to study. I had to go to another city, a 3h drive once a week at least to see doctors, I met every doctor in Lebanon. Shortly after my diagnoses and I was diagnosed with cardiomyopathy and scoliosis.

The first few years after my diagnoses I couldn't get along with my disease. I was bullied for the way I looked or how I walked, but here I am today, a SURVIVOR. I couldn't tell anyone what was wrong at school till the end of grade 10, 4 years after my diagnoses. I decided to spread awareness then and I did a presentation about FA at the end of grade 10.

Rhea Hoffman

Rhea HoffmanName – Rhea Hoffman

Age – 31

Where do you call home? Milwaukee, WI

Education – High School Diploma and a few years of college for Criminal Justice, Fire Science & Psychology.

What is your relationship status? Single, no kids. Live with my older brother & sister-in-law.

What is a typical day for you? Work full time, commute time is about 30 mins each way. We always have a lot of family gatherings during the weekends.

Kaity Ratcliff

Kaity 2Name: Kaity Ratcliff

Age: 17

Where do you call home? Prairieville, Louisiana

What is your current goal you have with education? I plan to graduate college to become an engineer.

Who do you live with? My parents and my older sister.

What's a typical day for you? I go to school, watch YouTube, listen to music, and do homework.

How long have you known you are living with FA? I was diagnosed 2 years ago.

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