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. Now, I’m considering how best to carry his legacy forward.
Turning 30 last October was a milestone for me, just like Tim’s turning 35 last year was for him. Most DMD survivors don’t grow up expecting to reach that age, as DMD is a fatal disease that causes the progressive loss of muscle tissue responsible for carrying out the body’s vital functions, especially the diaphragm and the heart. Most people with DMD are lucky to reach this age, as the average life expectancy ranges from the mid-20s to low 30s.
By adulthood, many of us depend on wheelchairs, ventilators, and full-time care. Living with that reality changes how we view the concept of time. DMD forces us to think about our impact on the world in a way that most people my age might not consider.
The healthcare system here in Singapore, a small and highly developed island nation in Southeast Asia, is known for its efficiency and structure. For more common conditions, that strength shows. But for rare diseases like DMD, the situation is more complicated.
Currently, many of the latest treatments for DMD in the West aren’t available here. Government funding and other support matters to DMD patients, as it shapes how long and well we live, and which treatment options we have. Unfortunately, rare disease funding still lags behind the progress we’ve seen in other countries.
Creating a lasting legacy
My advocacy journey started in 2007 when my late brother, Isaac, and I raised funds with art projects to support accessible transportation for Duchenne families. That initiative resulted in transportation services that many in our community still use today. Years later, I wrote a children’s book to help younger readers understand muscular dystrophy in a way that felt honest but hopeful.
Since 2022, I’ve served as an ambassador with the Muscular Dystrophy Association (Singapore) (MDAS), a nonprofit organization that supports people affected by neuromuscular conditions in childhood, with services, programs, and advocacy. I also serve on the board of a soon-to-be launched global advisory group led by Duchenne patients, where we push for patient voices to shape DMD research and policy.
When I think about the legacy I want to leave when I’m gone, I don’t seek personal recognition. I think about treatment access for everyone in the Duchenne community. I want a future in Singapore where a young boy diagnosed with DMD will have better treatment options than I did.
These experiences have shaped how I see my role in the community now. Advocacy is a process. Each project I undertake builds on the last one, just as each generation with Duchenne builds on the progress of those who came before us.
Tim lived with courage and presence. His life reminds me that the impact of advocacy is measured by how we choose to use our voices, not by the length of our days here on Earth. For me, that means speaking publicly, working with policymakers, and pushing for Singapore to fund, adopt, and support the latest Duchenne treatments and research.
I carry both Tim and Isaac with me in this work. Their stories aren’t finished; they continue with every step forward that I take.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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