On July 3, I received some deeply personal news: “Lov-Able,” a short film starring my girlfriend, Amanda, and me, was selected for inclusion in AN/OTHER Film Festival in Fremantle, Australia. This disability-led event is presented by DADAA, an Australian arts organization that promotes access to culture for…
Duchenne: Shalom's Lifelong Partner-in-Crime - a Column by Shalom Lim Ern Rong
Last month, the Purple Parade featured my story on its website. Reading my profile prompted me to reflect on why I continue speaking up about living with Duchenne muscular dystrophy (DMD) and what I hope these conversations might achieve. The Purple Parade is Singapore’s largest disability-inclusion movement,…
Back in March, I wrote about how living with Duchenne muscular dystrophy (DMD) has shaped my perspective on accessible design. After decades of moving through systems that were not built with people like me in mind, I had come to appreciate how disability can offer valuable insights into…
This week, I found myself reflecting on how much my life has changed since I joined Shalom Medcare, a care transport and medical escort provider in Singapore that was founded in 2021. Working there has become a part of how I advocate for healthcare equality for those who live…
The death of my dear friend Timothy Chan last month still affects me deeply. A couple weeks ago, I stood at his memorial, speaking about a friend who had lived fully despite the barriers associated with a lack of awareness about Duchenne muscular dystrophy (DMD) here in Singapore.
Last Saturday, I lost a dear friend of mine, Timothy Chan, who had Duchenne muscular dystrophy. He passed away in the hospital in the morning, days after he had been admitted with a respiratory illness. The unexpected news from his parents shocked me, as I had caught up with…
Last Saturday, I attended “Les Misérables: The Arena Spectacular” with my girlfriend at Marina Bay Sands in Singapore. This landmark resort includes a luxury hotel, a shopping complex, and a performing arts theater that hosts international productions. A musical based on the novel by Victor Hugo, “Les Misérables“…
For most of my life, Duchenne muscular dystrophy has defined how I navigate the world. Duchenne is a genetic condition that causes progressive muscle loss. Over time, it weakens the arms, legs, breathing muscles, and heart. Many adults with Duchenne, including me, use wheelchairs and rely on a…
On Feb. 19, my girlfriend, Amanda, and I presented at a seminar titled “AI in Social Work” at the National University of Singapore’s School of Computing, on behalf of our accessible art studio, Rebirth Ensemble. It explored how we can harness artificial intelligence (AI) to drive social impact by…
On Jan. 31, I visited the former Supreme Court Foyer at the National Gallery Singapore (NGS) for the final Artsplaining session of Light to Night Singapore 2026. NGS is a leading visual arts museum with the largest collection of Southeast Asian modern art. Artsplaining is its program designed…
Recent Posts
- In our new home, we will have more space for our sons with DMD
- MDA Engage: Seminar connects neuromuscular community in Hershey
- Our short film, ‘Lov-Able,’ heads to Australian disability-led film festival
- FDA set to decide on experimental DMD treatment in early 2027
- I wanted my oldest son with DMD to go to college more than he did