Friedreich's Ataxia Research Alliance

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!

Joseph Boon

Name: Joseph Boon

Age: 32

Where do you call home? Palmerston North, Aotearoa New Zealand

Education (degree(s): Bachelor of Arts double major from Victoria University of Wellington. I am considering getting a further teaching qualification, but I haven’t made up my mind.

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

What's a typical day for you? I spend my days painting, drawing, reading, writing letters, exercising, dog walking, watching good films and TV, and spending time with my young nieces and nephew. I also like to meet friends in cafes. Depending on my level of energy I may do any, or all of these things in a normal day.

Christina Buckalew

Christina Buckalew 1 Name: Christina Buckalew

Age: 21

Where do you call home? Austin, TX

Education: I’m currently working on my associates degree in Business Management at a community college. Next, I will be going for a Bachelors in Business Management, hopefully at Texas A&M. I aspire to acquire a Masters in Business Management from the Business school in Paris, France; but that is still to be determined.

Who do you live with? I live with my parents, my sister, my uncle, three cats and a dog.

What's a typical day for you? I am always doing something different. I am an avid volunteer, I ride horses, I go to physical therapy twice a week, I tutor my cousin, and I enjoy eating out. So, I guess you could say my typical day would be doing something that makes me feel alive.

Shandra Trantham

Shandra 1 Name: Shandra Trantham

Age: 24

Where do you call home? Gainesville, FL

Education (degree(s): I’m starting my 5th year as a PhD candidate in Genetics with the hope of graduating next year. FA has positively influenced my perspective as a researcher, and I ultimately want to continue to bridge the patient and research communities as well as branch out more into advocacy.

Who do you live with? I live in an apartment with my service dog, Abbey, and one of my best friends who also has FA, Christian Maugee.

What's a typical day for you? A typical day for me includes getting up early, feeding/walking Abbey, spending all day at work/school, then coming home to clean, make dinner, relax, and volunteer for FARA.

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 desk Name: 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.