
Mt Kinabalu climb back to raise funds for muscle disease
KOTA KINABALU (July 13): The annual Expedition Mt Kinabalu is back for its 12th edition to raise awareness and funding for Duchenne Muscular Dystrophy, the most common rare disease of childhood, present in one in 3,500 male births.
It was flagged off by Principal Senior Assistant at the Ministry of Tourism, Culture, and Environment, Murad Abdul Rashid, from Shangri-La’s Tanjung Aru Resort and Spa here on Saturday.
Organized by California-based non-profit Coalition Duchenne, the event comes just weeks after the US Food and Drug Administration (FDA) approved expanded use of the first gene therapy for the disease. The gene therapy, called Elevidys, was developed by pharmaceutical company Sarepta Therapeutics.
It uses viral delivery of a modified form of the gene called dystrophin, which is lacking in Duchenne.
“Gene therapy may not benefit my son Dusty who is older, and is therefore at more risk,” said Catherine, founder of Coalition Duchenne. “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 the science that will now help the future generations of individuals with Duchenne.”
This year’s Expedition Mt Kinabalu is charity Coalition Duchenne’s 12th climb.
“So much has changed since our first climb in 2011,” said Catherine.
“There’s a connection between raising awareness through global events like this and the progress that scientists and pharma have made in treating the disease. More awareness leads to funding of research for treatments and one day a cure. I’m also very thankful to all the climbing participants over the years who have been a part of this. We have created a community. We have brought over 700 people to Sabah for our event.”
In the United States, it is expected that the gene therapy treatment will initially cost over US$3.5 million per patient. Despite the intimidating cost, Catherine is advocating for Malaysian patients to have access to these potentially life-saving drugs. There are many Duchenne families in Malaysia who are following developments hoping that their sons will be able to benefit.
“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 their event, Coalition Duchenne is again donating RM20,000 to the Women and Children’s Hospital, Sabah, through their outreach initiative Duchenne Without Borders which has a mission of equity, diversity and safety. The funds will go towards helping boys in Sabah with Duchenne. The donation provides Duchenne patients with necessary and life changing equipment that they may otherwise not be able to access.
Catherine always dreamed of climbing Mt Kinabalu with her children; however, because her oldest son Dusty has Duchenne, he could never make the climb. She is inspired by Dusty’s resilience in the face of his challenges. At age 31, Dusty is in a wheelchair and is severely impacted by the muscle-wasting disease.
Dusty is very involved in the behind-the-scenes organization of the expedition. Although he faces challenges, he lives a full and meaningful life.
This year’s expedition includes 25 climbers from all over the world: Malaysia, Australia, USA, Germany, China, Singapore, the Philippines, and India.
Last year, Yohan Jayasuriya joined the climb and summited cosplaying as Batman following his climb as Iron Man the previous year.
Over the years Catherine has used innovative means to promote knowledge about Duchenne. In 2012, she brought a film crew to Sabah for her documentary Dusty’s Trail: Summit of Borneo. The film is the story of Dusty’s journey with Duchenne, and it tells about people coming together from around the world to climb Mt Kinabalu to raise awareness.
Catherine’s father, the late Tan Sri Thomas Jayasuriya, is interviewed in the film along with other family members, doctors and scientists. She also brought the first wingsuit flyers to Sabah and they soared above Mt Kinabalu in a bright red wingsuit emblazoned with the Coalition Duchenne logo.
-Admin