A week ago, I woke up early on a slightly cloudy, humid Sunday morning. I had butterflies in my stomach as my husband, Dave, and I drove 40 minutes to a fundraiser for my patient organization. I have Friedreich’s ataxia (FA), a disabling and life-threatening rare disease. Dave has…

Oh, those lazy days of summer are here. Unless I’m your mom and you have Friedreich’s ataxia (FA). In that case, it’s game on. Years ago, I noticed a yearly pattern with our daughter Amelia, who’s now 13. Long before she was diagnosed with FA at age 8,…

Friedreich’s ataxia (FA) can feel incredibly isolating. I’m fairly certain that rings true for most people going through life with a rare disease. Because FA is so rare, affecting only about 1 in 50,000 people in the U.S., few folks have even heard of it, much less understand…

The U.S. Food and Drug Administration (FDA) has provided Larimar Therapeutics with clear expectations for an application seeking accelerated approval of nomlabofusp, its potentially disease-modifying therapy for Friedreich’s ataxia (FA), according to the drug developer. Accelerated approval is a type of conditional approval based on early clinical…

This morning I was practicing my pre-getting-out-of-bed routine. I take a pill, do breathing exercises, and meditate for about 10 minutes. I mostly follow this routine, but not always. It’s my way of trying to start the day with a clear mind, and it almost always leads to a better…