A race has ended, and this time, I lost. I want to be honest, even though honesty feels especially heavy right now. I’d hoped to win this race. I really did. I’m deeply disappointed — not the explosive kind that demands attention, but the kind that settles in like fog,…

Skyclarys (omaveloxolone) improved key measures of function and cellular health in nerve cells from the dorsal root ganglia, clusters of sensory nerve cells next to the spinal cord that are affected early in Friedreich’s ataxia (FA), according to a cell-based study. The researchers also found that combining low…

Last Monday night, as my husband, Dave, left for a weekly meeting, I tearfully wished him well. He looked at me, baffled. The cause of my tears? I had decided to watch the newly released “Matter of Time” documentary on Netflix, which features Pearl Jam frontman Eddie Vedder and…

First in a series. When I broke, fractured, and dislocated my ankle in 2018, I earnestly prayed that it would be my first and only surgery resulting from a fall due to poor balance and coordination — symptoms of my Friedreich’s ataxia (FA). I hoped those two reconstructive plates…

Scientists at the University of Oxford are embarking on five pioneering research projects — together backed by more than half a million dollars in funding — that aim to advance the discovery of new treatments for Friedreich’s ataxia (FA). The new projects are being funded by the Oxford-Harrington Rare…