Duchenne to hold 6th expedition
Published on: Friday, August 05, 2016
Kota Kinabalu: Coalition Duchenne, a non-profit organisation that raises awareness and funding for Duchenne muscular dystrophy, is holding its sixth annual Expedition Mt. Kinabalu in Sabah. This year, the charity has announced that it is launching the Coalition Duchenne Outreach Initiative aimed at helping boys and young men worldwide with pulmonary issues associated with Duchenne. The expedition will be led by its founder and executive director of Coalition Duchenne Catherine Jayasuriya.
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Catherine who grew up in Kota Kinabalu had always dreamed of taking her children to the summit of the mountain. Her son, Dusty Brandom, has Duchenne and would never make the climb, and at 23, the young man is in a wheelchair and is severely impacted by the muscle wasting disease. "Their bodies fail them but their minds and dreams are strong," said Catherine. "Dusty is my daily inspiration and had inspired everyone he knows as he overcomes personal adversity with a smile on his face. I climb for him."
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The Coalition Duchenne Outreach Initiative is aimed at reaching boys and young men with Duchenne in rural areas all over the world. Coalition Duchenne will be providing families and caregivers with a simple respiratory device called an Ambu Bag along with an instructional pamphlet.
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An Ambu bag (Artificial Manual Breathing Unit) can improve pulmonary function in boys and young men with Duchenne. Ambu bags can be used for breath stacking, an important exercise that helps maintain lung function and flexibility, as well as clear airways of congestion.Respiratory issues are one of the main reasons that boys with Duchenne have a short life expectancy.Coalition Duchenne has established collaborations in India, Ghana, Sudan, Thailand, Laos, the Philippines, and Mexico. "We have chosen Sabah to be the first region to receive Ambu bags under the initiative," said Catherine. Coalition Duchenne will develop a registry of Duchenne patients as this will be useful for international researchers and communication of new drug and care options.In Sabah, Coalition Duchenne is collaborating with Dr. Heng Hock Sin, a paediatric neurologist at the Women's and Children's Hospital, along with the Inner Wheel Club of Kota Kinabalu, and Vivienne Yong of Move Well Physiotherapy helping with coordination efforts. Expedition Mt. Kinabalu was featured in Catherine's award winning film Dusty's Trail: Summit of Borneo (2013). This year Dusty's Trail featured as part of Rare Disease Week in Washington D.C. 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. Dusty's Trail has 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.The charity is one of the leading advocates for FDA approval of new treatments for Duchenne. A drug based on early research funded by Catherine's 'Dusty Brandom Fellowship' at the University of Western Australia is close to approval by the US Food and Drug Administration (FDA). Catherine testified as an advocate for approval of the drug, eteplirsen, at an FDA hearing in Washington DC in June this year. Expedition Mt. Kinabalu kicks off with a festive flag off at the Shangri-La's Tanjung Aru Resort and Spa on Aug 5 and also a free screening of the Dusty's Trail: Summit of Borneo. Stay up-to-date by following Daily Express’s Telegram channel.
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