Name: Caroline Spencer

Age: 33

Where do you call home? I am from Cincinnati, OH but just moved to Massachusetts, near Worcester.

Education/Career: I recently completed my PhD in speech pathology! Because of FA, I know what it is like to be a patient, and I feel that it gives me empathy for people with other kinds of disabilities and communication disorders, too. Being a patient myself makes me aware that research should not only be scientifically interesting, but meaningful to the patients, too.

What is a typical day for you? Mornings start with taking care of my service dog, Clark and getting us both ready for work. I am a postdoctoral fellow in the Communication and Neurodevelopment Lab at Boston University. In this post-COVID summer, I am going to work some days and work from home the others. I usually go for a walk with Clark at lunchtime. In the evening, my boyfriend and I will either cook something at home or go out to dinner. On the weekends, I like to work around the house or ride my trike.

Name: Christiane Wick-Jüttner

Age: 54

Where do you call home? I live in a small village in Hessen, Germany.

Education/Career: I studied educational science at the Justus Liebig University in Giessen and am a qualified pedagogue. I actually wanted to become an architect, but as my illness progressed, the student advisory service advised me against it.

Who do you live with? I live with my husband and two children in a large house with a big garden. Our son is a shepherd by profession, that's why we have 3 herding dogs.

What is a typical day for you? My husband dresses me in bed, puts me in the wheelchair, empties my urine bag in the bathroom, helps me with my daily morning hygiene and prepares my breakfast. Then I work on my computer, read the daily newspaper or a book. I am also often out and about in nature with my wheelchair traction device. We have a large circle of friends and everyone in our small village knows me, so I actually always have conversations. In the evening my husband brings me to the bathtub and carries me from there to bed.

Name: Ribar Mohamad

Age: 30

Where do you call home? United States of America

Education/Career: I finished high school in my home country of Syria and right now I’m learning English in the USA.

Who do you live with? I live with my family in our home.

What is a typical day for you? I do physical therapy and speech therapy, studying English at college, and doing some exercises at home.

Name: David (Dave) Arnold

Age: 36

Where do you call home? Grand Rapids, Michigan

Education/Career: Before knowing about my FA I aspired to be a Physical Therapist (PT or DPT) or a Physician Assistant (PA). The disease progressed steadily during undergrad but I was still able to attain a Bachelor’s degree in Clinical Exercise Science with a minor in Public Health. Many of my classes were tailored towards prerequisites of graduate programs in PT or PA. During that time I was also able to become certified as an Emergency Medical Technician (EMT). I worked very hard achieving good grades, and building my academic resume for grad school. Unfortunately, two hours before taking my last exam as an undergraduate student I received a phone call from my Neurologist that delivered some devastating news. “Your genetic test is consistent with a diagnoses of Friedreich’s Ataxia (FA)”, he said. I don’t even remember what else was said. I couldn’t breathe for about 30 seconds. I laid in my bed after the call and didn’t want to move. My physician had previously discussed FA with me. I researched it, knew exactly what it was, and what it did. I was just so certain that I did not have it. I was going to skip my exam as it didn’t seem to matter much. I remember thinking “why, I did all of the things I was supposed to do”? Everything I worked for and geared towards would become abilities that I would most likely lose in the near future. It would be really hard to successfully be a PT or PA when your own motor functions are being depleted. Not saying it can’t be done, but with FA progression it may be much more trouble than it’s worth (at least from my perspective). I was in rough shape. For me it was a pivotal point. Stay in bed and quit, or go take the exam and finish what I’d been working hard to attain for four years. Even though I did not want to, something drove me to go take my exam and finish my Bachelor’s degree. My education gave me a foundation for healthcare from the provider point of view and I wanted to stay in that field. I switched gears and pursued more administrative roles. After all I did end up going to graduate school and completing my Master’s in Healthcare Administration degree. Today, I have a good job and like what I do. Which is still in the field that I wanted to be in. I may seek further education one day as I do enjoy it, even though it can be very challenging at times. I am certain though that if I would’ve quit and stayed in bed that particular day, the after accomplishments would be non-existent.

Who do you live with? I live with my wife, 5 year old son and 2 year old daughter.

What is a typical day for you? I am very fortunate to still be able to live very independently. My work as well as my wife’s have been flexible to our family’s specific needs, which makes a world of difference. I get up around 6am. I work remotely from home (which I was doing before the pandemic) so it makes life much easier. I drink coffee and work via computer for about an hour and a half. Then I get my son up around 8am, get him ready, and to school by 9am. I return, continue working and do my best to be all finished by 3pm when it’s time to pick my son up from school. I try to make dinner a few times per week, and help keep up with daily chores (garbage, dishes, lawn mowing, bathing the kids, shopping, household cleaning, etc). Getting to the gym at least three times or more per week is something I always aim for. After some family time, the kid’s bedtime routine (reading books & pre-bed wrestling), I get to bed around 11pm. Then I get up and repeat it all over again.