Coalition Duchenne Mt Kinabalu Climb returns, workshop to be held

Borneo Post

4 days ago

The Neurology team, from right to left – Ryan Darrel Robert, Dr Elyssa Majawit, Dr Heng Hock Sin, Dr Gan Chai Woon, Farrah Japius, Eybron Benture.
KOTA KINABALU (July 31): Coalition Duchenne's 13th annual Expedition Mt Kinabalu will kick off on August 12 from Shangri-La's Tanjung Aru Resort and Spa, with an official flag-off by Tourism, Culture and Environment Minister Datuk Christina Liew.
The annual climb continues to raise global awareness and funding for Duchenne muscular dystrophy, a progressive and fatal muscle-wasting condition that affects one in 3,500 boys worldwide. There is no cure.
Over the years, Coalition Duchenne, a California-based charity, has donated RM40,000 to the Sabah Women and Children's Hospital through the Sabah Paediatric Association to support Duchenne care.
Catherine and her son, Dusty Brandom.
This year, the charity is taking things further by collaborating with Sabah paediatric doctors and rehab therapists to host Malaysia's first Duchenne specific multidisciplinary workshop.
The workshop will be held on August 10 at the Shangri-La Tanjung Aru Resort, gathering over 100 participants — doctors, educators, caregivers, parents, and boys with Duchenne, some of whom are traveling from across Sabah to attend. The workshop is a community outreach of the multidisciplinary clinic of Sabah Women and Children's Hospital and the Rehabilitation Medicine Department of Queen Elizabeth Hospital.
The doctors participating are part of the Sabah Paediatric Association, a professional body representing paediatricians across Sabah that advocates for the health and wellbeing of all children.
Benphysio, a leading Kuala Lumpur-based wellness and rehabilitation team, will be assisting with hands-on physiotherapy.
'Our dedicated clinic at Sabah Women and Children's Hospital offers holistic, multidisciplinary care for patients with Duchenne, bringing together specialists in rehab, endocrinology, neurology, cardiology, and complex care. It's all about patient-centered management,' said Dr Elyssa Majawit, pediatric neurologist at Sabah Women and Children's Hospital.
For Catherine Jayasuriya, founder and executive director of Coalition Duchenne, helping boys with Duchenne in Sabah is deeply personal. Her son, Dusty Brandom, is 32 and lives with the disease.
'After seeing the challenges one faces with Duchenne, I felt a strong need to contribute and make a difference. Returning to Sabah allows me to support these children and their families directly — through awareness, resources, and advocacy. It's not just about giving back; it's about creating real, lasting change where it's needed most. When you lift the most vulnerable, you lift up everyone,' she adds.
Catherine is Sabahan and grew up in Kota Kinabalu and always dreamed of taking her three children to the top of Mt Kinabalu. But after her son, Dusty Brandom, was diagnosed with Duchenne, this dream would no longer be possible. Now 32, Dusty uses a wheelchair and ventilator and follows the expedition from their home in California.
'The climb started after a dream I had in 2010,' she says. 'When my son was younger, there were no treatments or cures in sight, and I knew I had to do something. In my dream, a large group of people stood at the summit of Mt Kinabalu, all wearing red t-shirts with white lettering, united in purpose to raising awareness for Duchenne. I woke up and knew I had to make that vision a reality.'
Over the past 13 years, Catherine has found creative ways to spotlight Duchenne awareness. In 2012, she brought a film crew to Sabah to produce the documentary Dusty's Trail: Summit of Borneo, telling Dusty's story and the story of the climb. Her father, the late Tan Sri Thomas Jayasuriya, appeared in the film, along with family, scientists, and doctors.
She also brought the first-ever wingsuit flyers to Sabah — soaring over Mt Kinabalu in bright red suits emblazoned with the Coalition Duchenne logo.
Reflecting on the mountain and her journey with Dusty and Duchenne, Catherine says: 'Over the years we have witnessed the expedition grow into something meaningful; a unique convergence of adventure, advocacy, and action. But it's the smiles I'll remember.
The smiles at the summit, the smiles when we're back down. But most of all, the smiles of the boys and young men with Duchenne — those we can help and those we've lost. And, the smile of my son Dusty — pure, playful and full of quiet courage. Those are etched in my heart.'
Those smiles are lasting proof that Sabah's natural beauty now stands alongside a global humanitarian cause; one that reaches beyond borders to bring hope to those affected by Duchenne.