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…
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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,…
When I was a 25-year-old newlywed thinking about starting a family, the words “you have Friedreich’s ataxia” seemed like the worst life sentence imaginable, which would be followed by a painful and premature end. I was devastated. Now that I’ve lived with a Friedreich’s ataxia (FA) diagnosis for…
It’s usually easy for me to write about noticeable and significant issues related to Friedreich’s ataxia (FA), such as a severe hip injury or a new treatment option. Although I’ve written about seemingly insignificant, behind-the-scenes frustrations, a new one has taken center stage lately. This season on…
In 2006, when I was an 18-year-old senior in high school, I went skiing with my boyfriend, Kyle, and his family in Telluride, Colorado. While we were there, Kyle and I talked about how fun it would be to take our hypothetical kids skiing one day. For as long as…
It may be old news by now, but for those of us living with Friedreich’s ataxia (FA), there is a particular buzz about the very first treatment for FA approved by the U.S. Food and Drug Administration, Skyclarys, formerly known as omaveloxolone. I don’t believe the excitement…
My love language has always been words of affirmation. When someone gives me a genuine compliment or a little bit of encouragement, it has the power to change my mood and affect my whole day. Niceties lighten my load and put a spring in my step! On the other…
On Feb. 25, I attended the Fearless Mom conference at Lake Hills Church in Austin, Texas. There, I heard from Andy Andrews, the New York Times bestselling author of “The Traveler’s Gift,” “The Noticer,” and more. He said, “Perspective is how you choose to see things.
As of today, the status of Friedreich’s ataxia (FA) has changed from untreatable to treatable, thanks to the approval of Skyclarys (omaveloxolone) by the U.S. Food and Drug Administration (FDA). I still find it unbelievable that FA has a treatment. I’m reminded of high school, when one…
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