I sometimes feel afraid to open Facebook. I’m curious about how my friends are doing and what they’re up to, so I log in. Beyond many happy updates, however, I also see that some people in my Friedreich’s ataxia (FA) community are not doing well or have passed away.

As I’ve often discussed, there is no handbook for living with a progressively degenerative condition like Friedreich’s ataxia (FA). However, there are good general rules of thumb that everyone can follow, such as safety first; if at first you don’t succeed, try and try again; tomorrow is a new…

The investigational gene therapy LX2006 was well tolerated and led to clinically meaningful improvements in cardiac biomarkers and functional measures in people with Friedreich’s ataxia (FA) and a type of heart disease called cardiomyopathy, the results from two clinical trials show. The findings informed the design of a…

I both heard and felt the rumbling noise as the elevator jerked to a halt and I was plunged into darkness. Immediately I knew my error and was kicking myself. We were in the middle of a huge storm, and I’d known that a power outage was possible. Yet I…

As we navigate life, I think we’ve all felt, said, or at least heard the common saying “It’s always something.” I find myself saying that as a somewhat sarcastic self-challenge, meaning I still need to find a way to move forward, despite whatever new “something” there is to overcome.