On August 7-9th, the charity organization Coalition Duchenne, a non-profit that raises awareness and funding for Duchenne muscular dystrophy, is hosting the fifth Expedition Mt. Kinabalu in Sabah, Malaysia. This year, the climbers will not be able to reach the summit due to ongoing trail restoration efforts by Sabah Parks, but they are resolute in completing a modified expedition. They will be climbing to 11,000 feet to honor those who lost their lives in the June 2015 earthquake, and to raise awareness for their cause.
The expedition is led by Sabahan Catherine Jayasuriya, the founder and executive director of Coalition Duchenne. Catherine grew up in Kota Kinabalu, and always dreamed of taking her children to the summit of its sentinel mountain. Her son, Dusty Brandom, has Duchenne and would never make the climb. At 22, Dusty is in a wheelchair and severely impacted by the muscle wasting disease. Accompanying Catherine on the climb will be Paul Wong from Kuala Lumpur. Paul’s son Albert passed away in 2014 from Duchenne. Against all odds, Albert had successfully completed his studies in law and was helping develop brain-actuated disabled equipment.
“Their bodies fail them but their mind and dreams are strong,” said Jayasuriya, “Dusty is my daily inspiration and he inspires everyone he knows as he overcomes personal adversity with a smile on his face. I climb for him.”
Over the years, Expedition Mt Kinabalu has become a showcase of both Sabah’s natural treasures and Sabahan kindness. With the state rebuilding after the earthquake, the organizers wanted to share the stories of Sabah’s resilience and heroism with the charity’s followers around the world whilst drawing parallels with the struggles and heroism of those with Duchenne.
This year there is an international dimension to the climb. Lending their climbing legs to the cause, a group of women are climbing Switzerland’s most famous skyline, comprising of the Eiger (13,020 ft/3,970 m), the Mönch (13,474 ft/4,107 m), and the Jungfrau (13,642 ft/ 4158m). Led by Switzerland-based Englishwoman Lisa Hutchins, the climbers also honor Lisa’s husband, internationally renowned BASE jumper and wingsuit pilot Dan Vicary, who died tragically in 2014. Dan was a passionate supporter of Coalition Duchenne. The climbers in Switzerland include the “World’s Fastest Woman,” American wingsuit pilot Ellen Brennan. Climbing in Malaysia for Expedition Mt Kinabalu will be Dan Vicary’s mother, Diane Peterson, who is traveling from New Zealand.
Accompanying the women in Switzerland is ‘Scotty Bob’ Morgan, one of the world’s leading professional wingsuit pilots. He will fly from the summit of the Jungfrau wearing a bright red Coalition Duchenne wingsuit made for the charity by cutting edge wingsuit manufacturer Squirrel. Last year, as part of Expedition Mt Kinabalu, Scotty Bob, along with Australian Chris ‘Douggs’ McDougall, were the first ever to fly wingsuits in Borneo and garnered worldwide coverage for Sabah.
Coalition Duchenne’s Expedition Mt Kinabalu will be accompanied by executives from Sabah Parks. The restoration of the mountain trails is nearing completion and the mountain will be opening in stages. An announcement to climb to Laban Rata (11,000 ft) is anticipated soon. Coalition Duchenne’s Expedition Mt Kinabalu will be the first group, outside of workers and Sabah parks staff, to tackle the trail to 11,000 feet since the earthquake. “It is important to take the first steps back up the mountain,” said Datuk Masidi, the Sabah State Minister of Tourism, Culture and Environment.
“One thing that the earthquake cannot shake is that this is the place of our ancestors. I am a Dusun and I share this with Catherine, whose grandmother was a Kadazan, an understanding of the importance of the mountain. It is so close to the hearts of all of us in the state,” said Datuk Masidi. The mountain was close to the heart of Robbi Sapinggi, one of the mountain guides who died in the June earthquake. Robbi helped Catherine with her Expedition every year. He was heroic in saving climbers on the mountain in the earthquake.
Expedition Mt Kinabalu was featured in Catherine’s award-winning film Dusty’s Trail: Summit of Borneo (2013). The film has been shown at film festivals worldwide and has received several prestigious awards. Catherine’s 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. A clip from the film was uploaded to YouTube as a tribute to Robbi Sapinggi, showing him singing a song about the mountain with his father, and it was viewed over 100,000 times by people all over the world. This year, Dusty’s Trail secured distribution by Cinema Libre Studios, broadening its message of hope in the face of adversity, and spreading the word about the beauty of Sabah and its people.
Following the earthquake Datuk Masidi tweeted that the mountain was: “Battered but still standing strong with pride and majesty.”
“We will celebrate that pride and majesty with our Expedition this year,” said Catherine.
The event kicks off with a festive flag off at the Shangri-La Tanjung Aru Resort in Kota Kinabalu on August 7th, 2015. There is also an appreciation dinner on August 9th. On behalf of Coalition Duchenne, Catherine will be donating a check to the Mt Kinabalu Guides Association to help the guides during this time. Catherine can be contacted by email at Catherine@coalitionduchenne.org or through the Coalition Duchenne website at www. coalitionduchenne.org.
About Coalition Duchenne
Catherine founded Coalition Duchenne in 2011 to raise global awareness for Duchenne muscular dystrophy, to fund research and to find a cure for Duchenne. Coalition Duchenne is a US 501c3 non-profit corporation.
Coalition Duchenne has several research initiatives that are making advances in potential cardiac and pulmonary treatments for sufferers of Duchenne and other muscle weakening conditions. These include a $150,000 grant for a team at Cedars-Sinai Medical Center in Los Angeles, California led by Eduardo Marbán MD, PhD to do a Preclinical Study Using Cardiac-Derived Stem Cells in Duchenne Muscular Dystrophy.
For more information about Coalition Duchenne, please visit www.coalitionduchenne.org.
About Duchenne muscular dystrophy
Duchenne muscular dystrophy is a progressive muscle-wasting disease. It is the most common fatal disease that affects children. Duchenne occurs in 1 in 3,500 male births, across all races, cultures, and countries. Duchenne is caused by a defect in the gene that codes for the protein dystrophin. This is a vital protein that helps connect the muscle fiber to the cell membranes. Without dystrophin, the muscle cells become unstable, are weakened and lose their functionality. Life expectancy ranges from the mid teenage years to the mid 20’s. Their minds are unaffected.
About Dusty’s Trail: Summit of Borneo (2013)
A press kit is available for download from the Dusty’s Trail website:
dustystrail.com and also see www.cinemalibrestudio.com
Director – Dusty’s Trail: Summit of Borneo
President – Present Moment Yogi Productions
Founder and Executive Director – Coalition Duchenne
Phone +1 714 8014616 (USA)