August 8, 2015: On August 8th, the charity organization Coalition Duchenne, a non profit that raises awareness and funding for Duchenne muscular dystrophy, climbed to Laban Rata at 11,000 feet as part of its 5th annual Expedition Mt. Kinabalu in Sabah, Malaysia. Accompanying the Expedition were four Kinabalu guides, who were returning to the mountain trails for the first time since they lost family and friends in the tragic June earthquake that rocked the mountain and devastated the trail.
Catherine Jayasuriya, the founder and executive director of Coalition Duchenne said: “The Kinabalu guides have been so supportive of our climb for the past five years. They have been with us every step of the way. We appreciate them coming back to the mountain today. I know it is hard for them, but they have tremendous Sabahan spirit, and we are excited they could lead us up the mountain again.”
Over the 5 years of Expedition Mt Kinabalu, over 300 climbers from all over the world come to Sabah to climb Mt Kinabalu to raise global awareness for Duchenne. Raising awareness is important as it attracts attention, which attracts funding and research. Climbers from Argentina, Canada, France, Italy, Africa, India,Australia, New Zealand and beyond. This year, a group climbed peaks in the Swiss Alps for Coalition Duchenne, to raise awareness. They areclimbing the Eiger, the Jungfrau and the Monch.
The group honored Robbi Sapinggi, one of the mountain guides who died in the June earthquake. Robbi played a key role in organizing the previous Coalition Duchenne climbs.
“When I heard news of the earthquake, I was shocked. When I heard about Robbi and the others who died, I was devastated.” said Catherine.
Robbi was featured in Catherine’s award winning film Dusty’s Trail: Summit of Borneo (2013). Her film is the story of her son Dusty’s journey with Duchenne, and it tells about people coming together from around the world to climb Mt. Kinabalu to raise awareness. The mountain has always been an important symbol to Catherine, who grew up in Kota Kinabalu, and whose Kadazan grandmother lived in Limbanak. A clip from the Dusty’s Trail 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. Robbi’s father Sapinggi and his brother Binker climbed with Catherine to Laban Rata.
“The guides are true heroes. We want to share the stories of the Kinabalu guides’ heroism, resilience, and modesty with our charity’s followers around the world whilst drawing parallels with the struggles and heroism of those with Duchenne.” said Catherine.
Coalition Duchenne is presenting the 250 Mt Kinabalu guides with a limited edition Mt Kinabalu Hero medallion.
“We wanted to give the guides a small gift to show our appreciation,” said Catherine, “As the trails are rebuilt, and the mountain regains its place as a premier tourist destination they will continue their great work and ensure the safety of those who climb.
The charity is also making an RM2,000 donation to the Mt Kinabalu Guides Association.
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
Media Contact: Catherine Jayasuriya
Director – Dusty’s Trail: Summit of Borneo
President – Present Moment Yogi Productions
Founder and Executive Director – Coalition Duchenne
Phone +1 714 8014616 (USA)