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I love systems. From a professional standpoint, they fascinate me. I spent 20 years working as a social worker within a large system where I “grew up” professionally. Even when that system was frustrating, I understood it. I developed a new appreciation for the challenges of such systems as…

I was recently driving in an unfamiliar city one night after work. As I exited the freeway, I noticed that the headlights behind me abruptly entered my lane and were right on the rear of my car. After realizing the other vehicle wasn’t law enforcement, I wondered if I’d inadvertently…

Activity is a basic physiological need of all living things. For humans, it goes right alongside food, water, and air. And for people like me, who are living with Friedrich’s ataxia (FA), that activity must take the form of intentional exercise. Time out of the day must be…

I have a confession: I’ve made some pretty big mistakes in my life. They were never intentional, but they were still harmful. They involved silver linings, overly positive thinking, and a perpetual need to immediately fix things. Does any of this sound familiar? Perhaps you’ve done something similar. My youngest…

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…