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Note: This column describes the author’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When I was diagnosed with Friedreich’s ataxia (FA) in 2013, I was incredibly overwhelmed, to say the least. I’d never…

“Here, can I help with that?” The calm, low voice interrupted my ongoing battle with the payment station in the parking garage at our local children’s hospital. My dollar bills and credit cards had been rejected, and I was fishing in my purse for quarters while words were streaming out…

When I was diagnosed with Friedreich’s ataxia (FA), my greatest worry was how it would affect my future. What would living with a disability look like? What would FA add to my future? What would it take away? Now that I’m nearly a decade into life with…

As I sat in the darkened movie theater recently, the screen showed a colossal battle filled with too much reliance on CGI. I yawned and checked my watch. Not even halfway into the movie’s run time and I was already losing interest. I was surprised that the scene bored me…

I’ve recently been asked a couple questions that have stayed on my mind. As someone with Friedreich’s ataxia (FA), I receive many questions regarding my mobility device and overall disability. I’m often asked, “Why do you use a walker?” And the politically incorrect way of posing the same question,…

In my experience, much of what it takes to be a mother is the opposite of what’s required to live with a disability. As a mom, I constantly pour my all into my family. I manage the calendar and set the tone for the household, on top of all…

Although biology is a fairly standard requirement in the American educational system, and genetics is a frequently covered topic in biology, I’m realizing how little understanding most of us have about it. I was blissfully unaware of how little I’d retained from my adolescent studies until I had to try…

Living with Friedreich’s ataxia (FA) has created for me a complex relationship with the concept of help. I believe it’s important for everyone — not just people with disabilities — to humbly and graciously learn how to ask for and accept help. Fortunately (and unfortunately), FA rewrote the…

One of my favorite aspects of motherhood is getting a glimpse of the way young children experience the world around them by hearing their observations and fielding their questions. As the mom of two active, social, and athletic kids — a 5-year-old daughter, Collins, and an 8-year-old…

Melodramatic title aside, Tuesday, Feb. 28, was a nail-biter. The U.S. Food and Drug Administration (FDA) was expected to make a decision regarding the approval of Skyclarys (omaveloxolone) for my rare disease, Friedreich’s ataxia (FA). A long and bumpy road had led to this decision, and the…

About three years after my Friedreich’s ataxia (FA) diagnosis, the symptoms started to interfere with my productivity and safety. I acquired a disability parking placard and used it only when there were a lot of open accessible spots. One day, I was out running errands with my son,…

I think just about everyone has been told at some point in their lives to be grateful for what they have, to not wish the day away, and that people always want what they don’t have. On the other hand, we are also told that we were meant for more,…