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!
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.
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.
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.
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.
Meet the Community
Name: Robert Manuka
Name: Vincent Groot
Name: Dragana Obadić
Name: Goran Kovačić
Name: Justin Potter
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