As part of the field work required for my master’s degree in social work, I worked with someone who had a traumatic brain injury, trying to help him move away from destructive behaviors. I always thought part of the problem was that he was in his late 30s and living…

If there were Olympic medals for complaining, I’d have an impressive trophy room by now. For most of my life with Friedreich’s ataxia (FA), I didn’t realize I was “training” for that, because complaining had become second nature to me. I didn’t always do it loudly; it was often…

An international team of scientists has modified a standardized neurological assessment so it can better measure the severity of non-movement symptoms in people with Friedreich’s ataxia (FA). The researchers found that the updated assessment closely matches established measures of FA severity. They said the findings highlight how often overlooked…

This is the time of year when I ask my husband, Dave, what he wants for Christmas. He usually replies: “I don’t know, I haven’t thought about it.” He repeats it year after year, especially as Christmas or his birthday draws near. So, mostly, I select gifts without his guidance.

Friedreich’s ataxia (FA) shook up my life in every way imaginable. I started to notice a loss of balance and coordination in early 2013, which resulted in a five-month diagnostic journey and then a diagnosis of FA that August. It’s fair to say that in those early days,…