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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!


Lily Kate King

Screen Shot 2020 04 23 at 10.17.23 AMName: Lilly Kate King

Age: 16

Where do you call home? My home is Winnsboro, Louisiana, which is in the northeast part of the state.

Education: I am a sophomore at Franklin Parish High School, where I am an honor student.

Marieke Van Driel

MariekeName: Marieke van Driel

Age: 28

Where do you call home? Eindhoven (the Netherlands)

Education/degree: At Eindhoven University of Technology, I received my Master of Science (biomedical engineering) at the age of 24. My career started at the innovation site Eindhoven at Philips for two years full-time. Afterward, I kind of retired because of a lack of energy. However, I like to be busy, and I signed a small contract at Eindhoven University of Technology. My role is to help set up the education of biomedical engineering.

Who do you live with? I live on my own.

Collin Straathof

CollinName: Collin Straathof

Age: 26

Where do you call home? the Netherlands

Education degree(s): Bachelor Sports marketing/Commercial economy. I work as an online marketer. This work is good for me, despite the difficulties that FA entails. I work three days at the office and also do some work at home in the field of online marketing.

Who do you live with? I live with my parents but often live with my girlfriend.

Sam and Rebecca Hill

SamName: Sam Hill

Age: 16

Where do you call home? Annapolis, Maryland

Education: Current grade - Junior in high school

Who do you live with? My parents and two sisters

What's a typical day for you? I go to school every day and spend my weekends doing homework and spending time with my family.

How long have you known you are living with FA? I was diagnosed by a neurologist in November of 2015

Are there any others with FA in your family? My younger sister Rebecca has FA as well.

Şeyma Öztürk

Seyma 3Name: Şeyma Öztürk

Age: 23 years old

Where do you call home? Denizli, Turkey

Education degree(s): Post Graduate Education/ Be an academician and being the first academic FA patients in Turkey.

Who do you live with? I'm single, no kids. I'm living with my family.

What's a typical day for you? I wake up, have breakfast, have a rest, watch the series on the computer, read books, sleep.

How long have you known you are living with FA? I was 12 years old, and under the control of a doctor at Dokuz Eylül University in Izmir, the tests were performed because they suspected FA.

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