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I am conflicted about the word “cure.” Dictionary.com defines the noun in several ways, including: “a method or course of remedial treatment, as for disease. Synonyms: antidote, specific, restorative, remedy” and “a means of correcting or relieving anything that is troublesome or detrimental.” In my view, the idea…

I met my husband, Jason, when we were both student athletes at a small college in our hometown. He played football, and I was on the track team. Before we had children and settled into adult life, Jason and I enjoyed going to parties. We had so much fun together.

Recently, my role at Shalom Medcare shifted from marketing communications assistant to brand executive. This move aligns my professional work with my long-standing identity as a disability and patient advocate. Shalom Medcare is a Singapore-based medical escort and transport provider, and the new role strengthens the connection between my…

When I was a young mom watching my oldest daughter, Lexi, move from upper elementary to middle school, I often felt heartbroken and helpless. She was an excellent student and friend at school, but when she came home, her exhaustion could turn into crankiness, and it felt like she was…

I’m a member of the Western Pennsylvania chapter of the FSHD Society, which serves as a support group and a partner in the nationwide Walk & Roll to Cure FSHD campaign aimed at raising funds for the search for a cure for facioscapulohumeral muscular dystrophy (FSHD). The Walk…

When in the course of human events, it becomes necessary to make choices, we must first consider our options. Congratulations! By reading these words, you have made a choice to crawl into my brain (terrifying) for a few moments and learn about what is currently on my mind. If you…

My oldest son, Max, was diagnosed with Duchenne muscular dystrophy (DMD) in 2010, when he was 4. The doctor told us to expect that he’d need help with all of his activities of daily living in his teens and that he would die in his early 20s. Max turns…

Turning 30 last month was a significant milestone in my Duchenne muscular dystrophy (DMD) journey. For years, my care has revolved around keeping my vital functions strong enough to sustain a body whose muscles continue to wither with every passing second. Having lived with DMD since birth, I’ve witnessed…

Last weekend, my husband and I cleaned out our storage unit. My husband loves that unit, while I feel like we need one so that we don’t accumulate too much stuff around the house. We started renting it two years ago when we were hosting our oldest son’s high…

I have a growing list of limitations, as a result of my facioscapulohumeral muscular dystrophy (FSHD), my blindness, and other injuries from a long-ago head-on collision with a drunk driver. My wife, Wendy, and my daughter Jill, who are my primary caregivers, provide essential help every day: preparing meals,…