It’s been a wild and busy season for my family. Springtime in my household is usually eventful because it’s filled with things that we all enjoy, and most days, I wouldn’t have it any other way. From January through May, our calendar is typically chock-full of youth sports such as…

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…