SABAH TAKES ANOTHER STEP TOWARD MULTIDISCIPLINARY CARE FOR DUCHENNE MUSCULAR DYSTROPHY - Coalition Duchenne and Sabah Women and Children's Hospital Host Second Annual Duchenne Family Workshop
This past weekend, on August 1st, Duchenne Sabah held its second annual Duchenne muscular dystrophy workshop at the Sabah International Convention Centre. Duchenne Sabah is a collaboration between Coalition Duchenne, a California-based nonprofit, and the Sabah Women and Children's Hospital, working together to build toward a fuller model of specialized, multidisciplinary care for one of the world's most devastating rare diseases of childhood. This is a goal that remains very much a work in progress in this part of the world.
The workshop brought together doctors, educators, caregivers, parents, and boys with Duchenne from across Sabah and beyond for a day of expert-led sessions, hands-on physiotherapy led by the hospital's own PT team, and direct access to specialists. It served as community outreach for the hospital's Duchenne multidisciplinary clinic, one of the few programs of its kind in the region and a model the organizers hope to see grow and replicate.
"Our hope is that every family affected by Duchenne will know that they are never alone. Together, we will face the challenges ahead, supporting one another and ensuring that no family has to walk this journey without hope, care, and a community standing beside them," said Dr. Elyssa Majawit, pediatric neurologist at Sabah Women and Children's Hospital and one of only two pediatric neurologists in the entire state of Sabah. "This is what we hope to achieve from the Duchenne Sabah workshop. Events like this allow us to extend that care beyond the clinic walls and reach families who need it most."
Beyond medical care, organizers emphasized that progress for boys with Duchenne also depends on confronting the stigma around disability that remains prevalent in many communities. Families affected by Duchenne often face not only the physical toll of the disease but also social isolation and misunderstanding. These are barriers that can be as limiting as the condition itself. Changing that culture, workshop organizers say, is as essential to a boy's quality of life as any clinical intervention.
That same push extends to education. Many boys with Duchenne face schools and learning environments that are not built to accommodate their changing physical needs, and workshop organizers stressed that accessible education must be part of any comprehensive care model and not an afterthought. Ensuring boys with Duchenne can keep learning alongside their peers, for as long as possible, was raised repeatedly as a priority still in need of far greater attention and investment.
Within memory, a boy born with Duchenne in a kampung would go undiagnosed, given only the broad description "failure to thrive," and live a short, troubled life, often passing away in his early teens. For young boys attending the event their future is considerably brighter, a sign of what continued investment in care, awareness, and inclusion can achieve.
The workshop is made possible in part through the support of Expedition Mt. Kinabalu, Coalition Duchenne's annual charity climb of Southeast Asia's highest peak. Now in its 14th year, the expedition has raised over RM100,000 for Sabah Women and Children's Hospital, funding equipment, care resources, and initiatives like this workshop. Cath Jayasuriya and the expedition were featured on Sabah-based community radio station KupiKupi FM, furthering the reach of Duchenne awareness across Sabah. The climb once again drew international participants united by a common cause: accelerating awareness, research, and care for Duchenne.
"It is my hope that boys with Duchenne in Sabah are able to have the same level of care available in other parts of the world," said Catherine Jayasuriya, founder and executive director of Coalition Duchenne and a Kota Kinabalu native. "We are not there yet, but the hospital's commitment to these boys is extraordinary. Our role is to support that work, help break down the stigma these families face, and make sure families across Sabah know that they are not alone."
Coalition Duchenne extends its sincere appreciation to NS Pharma for its generous support of Duchenne Sabah.
Duchenne muscular dystrophy is a rare, fatal genetic disorder causing progressive muscle weakness from early childhood, primarily affecting boys. It is caused by the absence of dystrophin, a protein essential to muscle stability. Boys with Duchenne often lose the ability to walk by age ten and face life-threatening cardiac and respiratory complications in their teens and twenties. There is currently no cure, though emerging treatments are offering new hope.
Coalition Duchenne's Duchenne Without Borders initiative has supported underserved families in Malaysia, India, Algeria, Cambodia, and the Philippines with wheelchairs, BiPAP machines, Ambu bags, and care education. The goal is to ensure that boys with Duchenne, wherever they live, have access to the knowledge, tools, and inclusive opportunities, in the classroom and beyond, that are available in the United States and Western Europe.
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About Coalition Duchenne
Founded in 2011 by Catherine Jayasuriya and her son Dusty Brandom, Coalition Duchenne is a U.S.-based nonprofit dedicated to raising global awareness, funding research, and accelerating access to treatments and a cure for Duchenne muscular dystrophy.
More information: www.coalitionduchenne.org
About Duchenne Muscular Dystrophy
More information on the signs and symptoms of DMD:
Media Contact
Catherine Jayasuriya
Founder & Executive Director, Coalition Duchenne
Email: catherine@coalitionduchenne.org
Website: www.coalitionduchenne.org
WhatsApp: +1 714 801 4616
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