Expedition Mt Kinabalu returns to raise awareness for Duchenne muscular dystrophy

KOTA KINABALU: Global charity Coalition Duchenne will hold its eighth annual Expedition Mt Kinabalu on July 21-23 to raise awareness for Duchenne muscular dystrophy.

Coalition Duchenne founder Catherine Jayasuriya is Sabahan, her grandmother was Kadazandusun. Her 92-year-old father Tan Sri Thomas Jayasuriya lives in Kota Kinabalu.

Catherine’s 25-year-old son Dusty Brandom has Duchenne. Collectively, her annual expeditions have brought together nearly 500 climbers from all over the world to climb Mt Kinabalu. Each year a new group raises the Coalition Duchenne flag in honor of the hundreds of thousands of boys and men worldwide who have Duchenne. Climbers have come from the United States, Australia, Europe, Africa, and all over Asia.

“It has been significant bringing so many climbers to Sabah for our annual event,” said Catherine. “This year is special because we are really seeing progress in research that will one day cure Duchenne. One of the companies we have supported recently announced extremely promising results in a gene therapy trial. Although there will be challenging trials, and further breakthroughs will be needed, gene therapy holds the promise to eventually end Duchenne.

“I’ve been to the summit with so many people but never with my son,” Catherine said. “It is heartbreaking that his body has failed him, but his mind is full of hope and dreams. Dusty is my daily inspiration and he inspires so many people with his ability to overcome personal adversity. This year, as I do every year, I’m climbing for him.”

Expedition Mt Kinabalu has become a showcase of both Sabah’s natural treasures and Sabahan kindness. This year’s event will commence with a flagoff and cultural show hosted by Deputy Chief Minister and Minister of Culture, Tourism and Environment Christina Liew on July 21 at Shangri-la’s Tanjung Aru Resort and Spa (STAR).

Attending the flag-off are two researchers from PTC Therapeutics, a US pharmaceutical company that has started recruiting boys in Malaysia for a clinical trial at two sites in Kuala Lumpur.

“We have been advocating for boys in Malaysia and Southeast Asia to have access to new drugs that are being developed in Europe and the United States,” said Catherine.

Last year she presented a speech with this theme at the World Orphan Drug Congress in Singapore.

Catherine’s son Dusty and his grandfather, Tan Sri Thomas, are featured in Catherine’s award-winning film Dusty’s Trail: Summit of Borneo (2013). There will be a free screening of the film at STAR at 10am on July 21.

The film tells the story of Dusty’s journey with Duchenne, and about people coming together from around the world to climb Mt Kinabalu. Dusty’s Trail has an important message of hope in the face of adversity, and spreads the word about the beauty of Sabah and its people.

Catherine’s younger son, Lucas Brandom, is an up-and-coming fingerstyle guitarist living in California, and his music features in the film. Lucas will be performing with local special guests to promote the climb at the Shamrock Irish Bar, on the Waterfront in Kota Kinabalu at 9pm on July 16.

There is also space available to be a part of this year’s Expedition Mt Kinabalu on July 21-23.