Advent is the beginning of the church year for Christians. What better way to start the year than with a season of hope? During Advent, Christians prepare for the coming of Jesus, whom we believe is the incarnation of God. He entered our world, becoming human, when he was born…
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Words matter. For that reason, I’d like to share my thoughts on language, chronic illness, and how words shape societal views. I believe the way we use language can improve how patients living with rare conditions are seen, understood, and treated by the world at large. I’ve lived with…
Navigating the holidays creates some logistical problems for my family. It’s not because there are nine of us. We might be a big family, but if we can all fit in our average-sized, ranch-style home, then we can fit in most homes. Having three power wheelchair users in the family…
Last month, I attended “The Sun Will Shine,” a jukebox musical staged at The Star Performing Arts Centre in Singapore. I was invited by the SingHealth Patient Advocacy Network (SPAN), a collective of patients and caregivers who offer feedback to improve healthcare services. As someone living with Duchenne…
The holiday season is upon us, and I am already exhausted. I’m well aware of everything I need to do in December, so being this tired already isn’t great. It makes me think about the opening lines of “The Night Before Christmas”: “Twas the night before Christmas when all through…
It’s a wintery Monday morning as I write this. My wife, Wendy, left a while ago for an all-day outing with her knitting group. My daughter Jill, who lives with us, is working downtown today. It’s just as well. They say misery loves company, but I’m better off being by…
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…
Recent Posts
- I have new criteria for when my sons participate in DMD clinical trials
- New gene therapy for OPMD shows lasting success in small US trial
- How art fosters a sense of belonging in my life with Duchenne
- First boys dosed in Phase 2 trial of oral DMD treatment SAT-3247
- Guest Voice: Despite losses from Duchenne MD, I persevere