Taking to the Skies to Raise Awareness for Duchenne Muscular Dystrophy

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Coalition Duchenne supports World Duchenne Awareness Day

Last month, Borneo’s first ever flyby using a wingsuit took place as part of Coalition Duchenne’s fourth annual Expedition Mt. Kinabalu event, held in Sabah, Malaysia. The event raised US $100,000 for Duchenne research.

California based charity Coalition Duchenne supports the First World Duchenne Awareness Day on the 7th of September 2014. The 7th of the 9th has been chosen to represent the 79 exons in the Dystrophin gene. Duchenne Charities around the world will raise awareness for boys and young men who have Duchenne muscular dystrophy. Parents and supporters of Duchenne organizations will release an online virtual balloon to raise awareness for the disease, which affects on in 3,500 males across every border and culture. Coalition Duchenne is literally taking to the skies to raise global awareness. The organization has enlisted the support of the wingsuit community to fly for boys and young men with Duchenne at events worldwide.

Last month, Borneo’s first ever flyby using a wingsuit took place as part of Coalition Duchenne’s fourth annual Expedition Mt. Kinabalu event, held in Sabah, Malaysia. The event raised US $100,000 for Duchenne research.

Wingsuit flying is the sport of flying while wearing a wingsuit, which adds surface area to the human body. Coalition Duchenne has worked in collaboration with Squirrel, a manufacturer of wingsuits, to develop a bright red Coalition Duchenne wingsuit which has been worn by wingsuit flyers around the world.

Wingsuit flyers participate in a challenging, dangerous sport and can relate to the losses experienced by the Duchenne community. On 29 March, 2014, one of the most experienced wingsuit flyers, New Zealander Dan Vicary, lost his life in a tragic accident in the Swiss Alps. Dan was strongly committed to the Coalition Duchenne Cause and had planned to take part in Expedition Mt Kinabalu 2014.

World Duchenne Awareness Day resonates for Coalition Duchenne founder and executive director Catherine Jayasuriya. Her award winning feature documentary, Dusty's Trail: Summit of Borneo is aimed at raising global awareness about the disease. The film is screening at festivals worldwide and is available on DVD. It tells the story of her son Dusty Brandom’s journey with Duchenne, and about people coming together from around the world to climb Mt. Kinabalu and raise awareness. Dusty's Trail: Summit of Borneo will be showcased at the Lucerne International Film Festival in Switzerland in October, 2014.

“People have told me the film has changed their lives. Dusty’s attitude in the face of adversity, the way he does not even acknowledge adversity, has made people realize that they can overcome obstacles in their own lives,” said Catherine.

About Coalition Duchenne
Coalition Duchenne was founded 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. Its vision is to change the outcome for boys and young men with Duchenne, to rapidly move forward to a new reality of longer, fulfilled lives by funding the best opportunities for research and creating awareness.

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 and is currently funding 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, visit http://www.coalitionduchenne.org.

About Duchenne muscular dystrophy
Duchenne muscular dystrophy is a progressive muscle wasting disease. It is the most common fatal genetic 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 30’s.

About Dusty’s Trail: Summit of Borneo (2013)
Dusty's Trail: Summit of Borneo is an inspirational documentary about a young man's journey with Duchenne muscular dystrophy (Duchenne), a fatal and debilitating muscle wasting condition that affects one in 3,500 boys worldwide. The story tells about people coming together from around the world to climb a mountain in Borneo for charity to raise awareness for Duchenne. Dusty's Trail: Summit of Borneo celebrates life through the ties that bind all humanity. It's about the power of creating a positive, happy, fulfilling and inspiring life when the odds seem against it. Filmed in Borneo and California, the documentary is based on interviews with doctors, researchers, parents, friends and people who have been inspired by Dusty's life, some with whom he has never met, and others who share the same path. Available on DVD from dustystrail.com.

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Catherine Jayasuriya
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