Columns

I’m often asked to share my perspective about the future as a progressively disabled woman with Friedreich’s ataxia (FA). The question always makes me ramble on with a series of contradictory thoughts and words like “afraid,” “unsure,” “sad,” “overwhelmed,” and “anxious.” It’s clear I haven’t devoted much time…

Friedreich’s Ataxia News proudly presents “Beyond the Friedreich’s Ataxia Basics,” a live, virtual roundtable discussion taking place at 6 p.m. EST Nov. 1. This free event is open to all audiences — patients, friends and family members, caregivers, medical professionals, and anyone curious about the current state of the…

When my children were young, one of my favorite moments was story time before bed. Nothing felt better than having a child under each arm with a good book in the middle. I know that the lessons from literature can be compelling, and these moments were more than just…

I’ve come across the following succinct statement: “I have FA, but FA doesn’t have me.” Since I’m a columnist for Bionews, the publisher of this site, I thought I should do some research to find the origin of the pointed phrase, but to no avail. I’m left to suppose…

I love my “FAmily.” The network of incredible individuals that Friedreich’s ataxia (FA) has brought into my life since my daughter’s diagnosis has been such a blessing. I often say, “I hate this disease, but I love my people.” One such person is Jean Walsh. I met her while…

I’m not shy about my Friedreich’s ataxia (FA) diagnosis and how it’s affected my life. I share all of the twists and turns of my FA journey openly, all in the name of raising awareness, inspiring hope, and removing the feeling of isolation that so many people with…

Deciding when to disclose certain aspects of my life, and to whom, can sometimes be challenging. Although I’ve got a handful of things I don’t necessarily advertise, my living with Friedreich’s ataxia (FA) can be a bit glaring when I meet people for the first time. When I’m…

“Mom, come look at Amelia! It’s hilarix.” The gap-toothed smile of our then 6-year-old warmed my face, as did her inability to pronounce the word hilarious. I peeked around the door frame and immediately understood the complexity of what I was witnessing. Her younger sister, Amelia, then age 4, was…

When I was diagnosed with Friedreich’s ataxia (FA), I was obsessed with gathering research and other information to arm myself with anything that might prepare me or give me a slight advantage as I attempted to combat what the disease would do to my body. Although I can…

I’m no cartographer, but the adventurous part of me has always awakened when I hear about the saying supposedly inscribed on ancient maps: “Here be dragons.” Even though historians now believe that the phrase was only used on a single 16th-century globe, the rumor that most medieval maps warned…

As I stared at my fists gripping the steering wheel, I realized my muscles could not squeeze any harder. There was an absurdity here. I was white-knuckling my steering wheel, and my car was in park. The call that had sparked this reaction was still in progress. The medical professional…

I can’t put my finger on why, but lately, I’ve been thinking about how fragile and short life is. More than ever, I feel challenged to make the most of my time on earth. I’m sure everybody has a similar realization at some point. Whether we feel close to death…