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 email@example.com if you would like to be interviewed for a Meet the Community post.
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!
Name: Robert Manuka
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.