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…
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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…
Guilt is a plight of the human condition that comes in many forms. I wrestle with it often. One common form, for example, is “mom guilt,” a topic that inspires countless books, articles, social media posts, texts among friends, and so on. I grapple with mom guilt almost daily.
I just got back from a walk with my service dog, Wendy. It’s a beautiful fall day in my neighborhood. The mums are starting to burst with brilliant colors, and some of the trees that are a little stressed are developing orange leaves. I had a different topic in…
Staring across the table, I gave a reassuring smile to the student intern who was shadowing me that day. I mouthed “it’s OK” as heavily armored police moved through the home. We’d arrived at a client’s house just moments before a search warrant was executed and, with our badges visible,…
As I’ve grown more physically disabled with Friedreich’s ataxia (FA), I’ve developed a new ability: knowing quickly how to address a stranger’s concerns about my disability. Whether it’s a curious child inquiring about my walker, an older person curious about that or other mobility aids, or a fellow…
Years ago, I wrote the column “Becoming the Miracle We Seek,” and I’ve been reflecting recently about its portrayal of an early part of my journey, when I wanted prayer to bring me a miraculous healing from Friedreich’s ataxia (FA). For most of my life, I…
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