Coalition Duchenne

Corona Del Mar High School Juniors tackle Southeast Asian Mountain for Charity Climb to Benefit Duchenne Muscular Dystrophy

Newport Beach - March 28, 2012

Two Corona del Mar High School Juniors, Lucas Brandom and Evan Romano, are heading to the wilds of Borneo this summer to conquer the 13,455 ft high Mt. Kinabalu in support of Coalition Duchenne, a Newport Beach charity that raises funding and awareness for Duchenne muscular dystrophy.

The students will join a team of 60 climbers from all over the world. The group plans to summit on August 25, 2012.

The climb is being organized by Coalition Duchenne founder Catherine Jayasuriya, Lucas Brandom’s mother.

“20,000 boys are born each year with Duchenne, more than 50 each day. Most do not live into their 20s. Lucas’s 19-year-old brother Dusty is one of those boys.” said Catherine Jayasuriya. “We need to focus on changing the course of the disease, taking our quest to another level. Expedition Mt. Kinabalu is an event that is helping to achieve that goal.”

Dusty Brandom graduated from CDMHS in 2011.

Catherine adds, “Duchenne is a difficult road, and presents significant challenges along the way. Duchenne steals many things, the ability to walk, to hug, to move, to talk, to breathe, but there is that something inside of you, that it can never get to, that it can never take… Hope.”

Lucas Brandom summitted Mt. Kinabalu last September as part of the inaugural Expedition Mt. Kinabalu and was adament that he would never climb again. However, time heals blisters and sore muscles and memories of a cold, wet mountain top. “I thought I would never climb again but this cause is too important.” said Lucas. “We had a lot of coverage in the Malaysian newspapers last year, we sure raised a lot of awareness.”

Evan Romano is no stranger to mountain climbing and expeditions to far flung places. Two years ago he travelled to Peru and climbed to the ruins at Matchu Picchu. “I am looking forward to this adventure. And Lucas’s mom told me I need not worry about the headhunters of Borneo, because the crocodiles ate them all.” joked Evan.

Catherine and her family have a strong connection to Borneo and Mt. Kinabalu. She is one quarter Kadazandusun. Her grandmother lived in the small village of Limbanak just outside Kota Kinabalu. The Kadazandusun people, who live along the foothills of Mt. Kinabalu, hold the mountain sacred and believe that their ancestors’ spirits dwell on the mountaintop. Catherine said that on the morning before the climb there will be a blessing and a ritual to appease the spirits of Mt. Kinabalu.

Catherine founded Coalition Duchenne in 2011 (www.coalitionduchenne.org) to raise global awareness for Duchenne muscular dystrophy, to fund research and to find a cure for Duchenne. Coalition Duchenne is a 501c3 non-profit corporation. Coalition Duchenne is a call to action; it is about bringing not just Duchenne charities together, but everyone. It calls for humanity to come together as nations, as people, as individuals, to help. As Martin Luther King Jr said, “We are confronted with the fierce urgency of now.”

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.

Donations to Coalition Duchenne can be made on the website at www.coalitionduchenne.org or at http://www.active.com/donate/duchenneexpedition2.