Two years ago, our family attended an event hosted by the local chapter of A Kid Again, a nonprofit dedicated to providing monthly adventures for families raising a child with a life-threatening illness. We were invited because in 2020, our youngest daughter, Amelia, then 8 years old, was diagnosed…

My family and I recently started streaming season 20 of the popular show “America’s Got Talent,” also known as “AGT.” I love seeing my children react to the beautiful singing, athletic dancing, mind-blowing magic, edge-of-your-seat danger, and much more. To quickly summarize, all acts must audition for four judges, who…

Treatment with nomlabofusp, Larimar Therapeutics’ experimental therapy for Friedreich’s ataxia (FA), leads to increased frataxin protein levels in cells throughout the body — changes that, according to new research, may be monitored using easily accessible skin or cheek cell samples. The new findings, based on analyses in mouse,…

I imagine young people with Friedreich’s ataxia (FA) must search the internet to learn more about their diagnosis. Maybe they will come across this column. So this week, I will write to them. When we are young, our friendships are central to our lives. But after I was…

I like to consider myself someone who both thinks things through and can go with the flow, even though those two traits might seem to contradict each other. But maybe that’s what nearly 13 years with a disease like Friedreich’s ataxia (FA) will do to a person. Since my…