Kota Kinabalu, Malaysia: The 13th annual Expedition Mt Kinabalu kicks off from STAR Shangri-La Tanjung Aru on the 12th of August, 2025. There will be 20 international climbers supporting the cause, including world-renowned mountaineer Ravi Everest. Over the years, the event has brought together over 700 international climbers to Sabah to raise awareness for Duchenne.
Awareness leads to change. Now the climb is generating momentum for Duchenne patients in Malaysia to have equal access to international drug trials and treatment options. More than 1,300 parents and caregivers from across Malaysia have come together to advocate for access to life-changing therapies for Duchenne muscular
dystrophy, one of the most severe and fatal genetic disorders.
Through a Change.org petition, they are urging U.S.-based pharmaceutical companies to bring clinical trials for Duchenne to Malaysia. This is an initiative they believe can be a “win-win,” offering companies a valuable patient base while giving children in southeast Asia access to potentially therapies.
Duchenne affects approximately 1 in 3,500 boys worldwide. It leads to progressive muscle degeneration, loss of mobility by around age 10, and premature death due to heart or respiratory failure. Despite breakthroughs in research, access to investigational drugs remains limited in many parts of Asia. Access to these drugs directly impacts the quality of life and life expectancy of people with Duchenne.
Two of the campaign’s leaders are Catherine Jayasuriya, a Sabahan living in California and founder of the U.S.-based charity Coalition Duchenne, and Alyce Tan, a Kuala Lumpur mother whose 14-year-old son Rayce lives with Duchenne.
Jayasuriya has been advocating for Duchenne awareness and research for over 25 years through efforts such as Expedition Mt. Kinabalu, now in its 13th year. Jayasuriya’s son, Dusty Brandom, is 32 and lives with Duchenne. It was during one of these events that Jayasuriya met Tan, and their shared mission to help their sons sparked this broader campaign.
“We stand together, not only for our own children, but for all those in the region in seeking equitable access to innovative therapies,” said Tan.
Malaysia is increasingly being recognized as a site for international clinical research, thanks to its strong healthcare infrastructure and skilled medical professionals. Hospitals such as University Malaya Medical Centre (UMMC) and Hospital Kuala Lumpur (HKL) are well-equipped and have experienced clinical researchers.
“Malaysia is trial-ready,” said Jayasuriya, who recently presented the petition to ten pharmaceutical companies during an international Duchenne conference in Las Vegas.“There is strong interest from both our medical teams and also from families in participating in studies.”
The emergent quality of Malaysian healthcare was showcased in Sabah this week. In a historic milestone, on August 10t, Coalition Duchenne collaborated with Sabah Women and Children’s Hospital and hosted Malaysia’s first Duchenne-specific family workshop, at the Shangri-La Tanjung Aru Resort in Kota Kinabalu. Over 100 participants, including patients, caregivers, doctors, and educators, gathered to share knowledge, build support networks, and strengthen the Sabah Duchenne community
“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, pediatric neurologist at the Sabah Women and Children’s Hospital. Dr. Majawit is one of two pediatric neurologists in Sabah.
Coalition Duchenne helped patients from across Sabah travel to attend the workshop, many of whom met other Duchenne families and learned about the possibility of trials for the first time.
“There is no cure for Duchenne, and the journey to finding one starts with patients and families willing to participate in a clinical trial,” said Jayasuriya, whose son Dusty Brandom, now 32, participated in one of the earliest trials in the U.S. at age 14.
“We just want our son to have the same chance as boys in other countries,” said Puspa Rajah Palasingam, father of Adithiyaa, a 10-year-old with Duchenne from Ipoh, Perak. “It gives us hope to see Malaysia being included in these conversations and efforts.”
“Our slogan is ‘advocate, collaborate, and enable,’” added Nadiah Hanim Abdul Latif, the President of the Malaysian Rare Disorders Society, in support of the petition and the growing parent-led movement.
“We are here,” said Jayasuriya in a recent interview on BFM 89.9 The Business Station. “Boys and young men with Duchenne in this region need a voice. We are ready to partner, participate, and make a difference.”
About Coalition Duchenne
Founded in 2011 by Catherine and her son Dusty, Coalition Duchenne is a US-based non-profit focused on raising awareness, funding research, and advocating for treatments and a cure for Duchenne muscular dystrophy.
The organization has backed cutting-edge research into cardiac and pulmonary treatments, and is a strong voice in the push for FDA approval of new therapies.
Its newest initiative, Duchenne Without Borders, supports underserved families worldwide with access to equipment, education, and care protocols. In Sabah, the program has already provided wheelchairs, Ambu bags, BiPAP machines, and more.
More info: www.coalitionduchenne.org (http://www.coalitionduchenne.org/)
About Duchenne Muscular Dystrophy
Duchenne muscular dystrophy (DMD) is a rare, fatal genetic disorder that causes progressive muscle weakening from early childhood. It affects mostly boys, who often lose the ability to walk by age 10 and face severe heart and lung complications by their teens or twenties.
It is caused by a lack of dystrophin, a protein essential to muscle strength and stability. There is currently no cure, though treatment and care protocols continue to improve quality of life and lifespan.
Learn more: www.duchenneandyou.com (http://www.duchenneandyou.com/)
Contact:
Catherine Jayasuriya,
Coalition Duchenne, http://www.coalitionduchenne.org,
WhatsApp +1 7148014616, mailto:catherine@coalitionduchenne.org
