“This is your life, are you who you want to be?” the band Switchfoot crooned from my speaker as I put on a random morning playlist last week. Even though I’d heard this song, “This Is Your Life,” hundreds of times, thoughts of identity and destiny clouded my mind anew,…
A couple weeks ago, I wrote that I was planting bulbs in my garden. I’m still doing that because I always buy too many. They’re just too beautiful for me to pass up! OK, I could pass them up, but I indulge myself. Every fall, I feel overwhelmed. But as…
Holding the phone to my ear, I exhaled slowly before speaking into the receiver. I’d dreaded getting this appointment on our calendar and had been waiting on hold to talk to a hospital scheduler. Some trips to the hospital are harder than others when managing my 12-year-old daughter Amelia’s…
I’ve been thinking a lot about the stories I tell myself about my life, as they can make a big difference in how I feel. Telling myself a productive story has especially helped me in my 43-year journey with Friedreich’s ataxia (FA). As an example, I finally got a…
I was diagnosed with Friedreich’s ataxia (FA) at the age of 25. What led me to that diagnosis was a quest for answers about why I was losing my athletic abilities. I was always very active, participating in cheerleading, swim team, softball, volleyball, track, and any other sport possible.
Last week, I had a bump in navigating my Friedreich’s ataxia (FA) road. The wheelchair I use because of my FA symptoms went offline. I use a Whill C2 wheelchair, and I love it. I’d love not needing a wheelchair a hell of a lot more, but a…
Why did I write a children’s book? I’m not sure, but I know firsthand that being diagnosed with a rare disease is profoundly isolating. Because I didn’t feel I could voice that at the time, my book will now speak for me, helping others who might feel isolated, too. At…
While attending a recent Friedreich’s ataxia (FA) symposium, I tried, as I always do, to take in the science. I’m grateful that the annual symposium, held by the Friedreich’s Ataxia Research Alliance (FARA) and the Friedreich’s Ataxia Center of Excellence at the Children’s Hospital of Philadelphia, always moves…
I recently went to Philadelphia for rideATAXIA, a fundraiser bike ride benefiting the Friedreich’s Ataxia Research Alliance (FARA). The event was followed by a symposium focused on summarizing the current research on new treatments and a potential cure for Friedreich’s ataxia (FA), as well as helping…
As I headed west down the familiar highway from Pennsylvania to Ohio, my mind spun as my eyes took in the autumn hues around me. After two amazing days at the 2024 Friedreich’s Ataxia Symposium, I welcomed the long ride home in quiet. Usually, my drives to Philadelphia…
Life is full of teachable moments, which are opportunities to share one’s experience, wisdom, and advice. When I became a parent 10 years ago, I anticipated being confronted with countless such opportunities. But I recently found myself uniquely qualified for a particular teachable moment. Because of my Friedreich’s ataxia…
Saturday, Sept. 21, was a sloppy one. Skies were gray and rain poured down, but there were lots of smiles to go around. It wasn’t an ideal day for the Race for Matt and Grace, a 5K run and 1.5-mile walk to benefit my patient organization, the Friedreich’s…
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