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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!

Robert Manuka

Robert Manuka Name: Robert Manuka

Age: 35

Where do you call home? I live in a sea city called Durres, Albania

Education: I have finished High school

Who do you live with? I live with my wife and my daughter

What's a typical day for you? I like to read books

How long have you known you are living with FA? I was diagnosed with Friedreich Ataxia in 2002 after I took the genetic tests.

Are there any others with FA in your family? Yes, my two brothers also have Friedreich Ataxia

Describe an adaptation and/or transition you have had to take due to living with FA. When I was first diagnosed, I used crutches, then a walker. Now, I use a wheelchair.

Vincent Groot

Vincent Groot at his deskName: Vincent Groot

Age: 43

Where do you call home? Woerden, Utrecht, The Netherlands

Education: I have a Bachelor’s Degree in Human Resource Management. Unfortunately I have never worked in the field because of FA.

Who do you live with? I am single and have no children.

What's a typical day for you? I am still pretty active. I wake up around 6/7 am. I do some stretch exercises (especially legs), then dress. I have breakfast and coffee. Then I’m off to work. I am a graphic designer (career change after FA). I start at 9 am until 2:30 pm. After some coffee I go home to cook and relax.

Dragana Obadić

Dragana 1 Name: Dragana Obadić

Age: 32

Where do you call home? I grew up in a small town called Glina, and after college I moved to Čakovec, Croatia.

Education (degree(s): I graduated from the Faculty of Management in Tourism and Hospitality with a master of economics degree.

Who do you live with? I live with my husband.

What's a typical day for you? I worked at the hotel reception. Currently I am on sick leave because I was researching what was wrong with me because of my walking difficulty. Right now I'm more dedicated to myself - I do exercises every day and occasional walks, but my husband is always with me. At the end of the day, I like to watch sitcoms or good movies with my husband. We have two dogs that we take care of.

Goran Kovačić

Goran 1 Name: Goran Kovačić

Age: 34

Where do you call home? Samobor, Croatia

Education (degree(s): High school

Who do you live with? My parents

What's a typical day for you? Training, work, walk every day for a minimum of 2 km with assistance.

Justin Potter

Justin Potter Name: Justin Potter

Age: 24

Where do you call home? South Jersey

Education (degree(s): I have my High School diploma. I tried community college but school just isn’t my thing! I have worked in security and am trying to get certified in IT work.

Who do you live with? I live with my grandfather, one of my younger brothers, and my dog Marley.

What's a typical day for you? Wake up in the morning, eat something, shower, and go on with the day however it goes. Whether it's different appointments or anything in general.

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