KOTA KINABALU: Catherine Jayasuriya has been climbing Mount Kinabalu annually for the past 12 years to raise awareness and funding for research into Duchenne Muscular Dystrophy (DMD).
The founder of the Duchene Coalition, which was established in 2010, is also the mother of 31-year-old Dusty Brandom, who was 6 when he was diagnosed with the disease that affects one in 3,500 male births.
In 2011, Catherine, who is half-Sabahan, organised her first expedition after having a dream of a large group of people from all over the world at the top of Mount Kinabalu wearing red t-shirts with white wordings to raise awareness about DMD.
Since then, the expedition has grown, bringing over 700 people from 27 countries to climb the highest mountain in southeast Asia.
This year's event includes 25 climbers from Malaysia, Australia, the United States, Germany, China, Singapore, the Philippines and India, who will start climbing tomorrow.
She said the expedition comes just weeks after the US Food and Drug Administration (FDA) approved the expanded use of the first gene therapy for the disease.
The gene therapy, called Elevidys, was developed by pharmaceutical company Sarepta Therapeutics. It uses a viral delivery system to insert a gene called dystrophin into the patient's muscle cell DNA.
"Gene therapy may not benefit my son Dusty, who is older and therefore is at high risk. When Dusty was younger, he participated in early clinical trials that included having four muscle biopsies.
"Those trials, and others that followed, have led the way to new treatments.
"In this way, Dusty has made significant contributions to science that will now help future generations of individuals with DMD," she said during the flagging-off ceremony for expedition participants at a hotel here.
Catherine added that in the US, the Elevidys gene therapy is expected to cost more than US$3.5 million (RM16.1 million) per patient.
Despite the intimidating price, Catherine is advocating for Malaysian patients to have access to this potentially life-saving treatment.
"There are many families with DMD children in Malaysia, who are following developments, hoping that their sons will be able to benefit," she said.
"We must move toward equity in resources. We need to include everyone. We must work to remove barriers.
"If we work together as a coalition we will find solutions. There is definitely hope that all boys and young men with Duchenne will eventually benefit from these treatments."
As part of the event, Coalition Duchenne has donated RM20,000 to the Sabah Women and Children's Hospital to help boys in Sabah with the condition.
The donation provides DMD patients with necessary and life-changing equipment that they may otherwise not be able to access.