The 14th annual Expedition Mt Kinabalu was flagged off on July 25th from Shangri-La’s
Tanjung Aru Resort, continuing a tradition that has become one of the most powerful
intersections of adventure and rare disease advocacy in the Asia-Pacific region.
The annual climb raises global awareness and funding for Duchenne muscular dystrophy, a rare and fatal genetic disorder primarily affecting boys. Over the last fourteen years, the climb has brought together over 700 climbers from countries all around the world. During this time, Coalition Duchenne, a California-based charity founded by Catherine Jayasuriya and her son Dusty Brandom, has donated nearly RM100,000 to the Sabah Women and Children’s Hospital and helped establish Malaysia’s first Duchenne-specific multidisciplinary clinic and family workshop. The annual workshop, called Duchenne Sabah, was first held last year in a milestone collaboration with the hospital.
This year’s expedition arrives at a pivotal moment for the Duchenne community worldwide.
Deramiocel, a cell therapy, is approaching a key United States Food and Drug Administration
review, a milestone that could represent a significant treatment advancement. Coalition
Duchenne funded the early science that led to development of the drug and has been a vocal advocate for its approval and for ensuring that boys around the world, including those in underserved communities like Sabah, can also benefit.
“When we founded Coalition Duchenne in 2011, there were no treatments in sight,” said
Catherine. “Now we have treatments that could change the trajectory of this disease.”
Adding to the significance of this year’s climb, Catherine, who is Sabahan, is returning to Sabah with a film crew to begin production on a new documentary, a follow-up to her landmark 2013 film Dusty’s Trail: Summit of Borneo.
Catherine said, “The new film will study the implications of the limited time that young men
with Duchenne have, and the universal themes of perseverance and how to live a fulfilling life.”
Dusty Brandom, now 33, uses a wheelchair and ventilator and follows the expedition from the family’s home in California. He lives his life to the fullest, and currently has a patent pending for a control system he invented to make flying drones accessible for those with limited mobility.”
His mother founded the climb in 2010 after a dream in which a crowd of people in red shirts
stood united at the summit of Mt Kinabalu, raising awareness for Duchenne. That vision has
since grown into a global humanitarian effort.
Three climbers have joined the expedition more than ten times. One of them, Richard Hoare, is climbing with his ten-year-old son, Koen, who was not even born when he joined the inaugural climb back in 2011.
“The climbers come back every year because of the friendships, the camaraderie, and because together we are part of something much bigger than ourselves,” said Catherine. “But it’s the boys, their smiles, their courage that keeps pulling me forward.”
Coalition Duchenne’s Duchenne Without Borders initiative continues to provide wheelchairs,
BiPAP machines, Ambu bags, and care education to underserved families in Sabah and beyond. The organization is also deepening its collaboration with Sabah Women and Children’s Hospital, building on last year’s groundbreaking multidisciplinary workshop.
