Kota Kinabalu: Awareness of Duchenne muscular dystrophy remains low in Malaysia, but organisers of the 13th Annual Expedition Mt. Kinabalu hope their climb will help change that — while marking a significant milestone in advancing care in Sabah.
Organised by the California-based charity Coalition Duchenne, the flag-off ceremony was officiated by State Tourism, Culture and Environment Assistant Minister Datuk Joniston Bangkuai, representing Minister Datuk Seri Christina Liew.
This year’s expedition features 20 international climbers, including world-renowned mountaineer Ravi Everest, with 12 making their first ascent of Mt. Kinabalu.
Coalition Duchenne founder Catherine Jayasuriya said the climb is generating momentum for Malaysian patients to gain equal access to international drug trials and treatment options.
“The expedition has really grown into something meaningful. I see it as a unique convergence of adventure, advocacy, and action,” she said.
Through a Change.org petition, the coalition is urging U.S.-based pharmaceutical companies to bring clinical trials to Malaysia — a move advocates believe would benefit companies by expanding their patient base while giving Southeast Asian children access to potentially life-saving therapies. More than 1,300 parents and caregivers nationwide are backing the call.
On August 10, Coalition Duchenne collaborated with the Sabah Women and Children’s Hospital to host Malaysia’s first Duchenne-specific family workshop in Kota Kinabalu.
Over 100 participants — including patients, caregivers, doctors, and educators — attended to share knowledge, strengthen support networks, and build the Duchenne community in Sabah.
“We’re excited to provide multidisciplinary support for those with Duchenne in Sabah and promote Malaysia as a clinical trial destination,” said Dr. Elyssa Majawit, one of only two paediatric neurologists in the state.
Coalition Duchenne also assisted patients from across Sabah to attend, many of whom learned about clinical trials for the first time.
Duchenne is a severe and fatal genetic disorder affecting about 1 in 3,500 boys worldwide, causing progressive muscle degeneration, loss of mobility by around age 10, and premature death from heart or respiratory failure. There is currently no cure.
Since its inception, the expedition has brought over 700 international climbers to Sabah to raise awareness of the disease.
Joniston said Sabah is proud to be the heart of this global movement. “Each year, this expedition reminds us that tourism can do more than showcase nature — it can inspire unity, compassion, and make a lasting impact,” he said.
