Tuesday, August 16

35 to conquer Mt Kinabalu to raise disease awareness

0

KOTA KINABALU: An international team of 35 climbers from nine

countries will climb Mount Kinabalu to raise awareness for Duchenne muscular dystrophy and source of funding for its research and  cure.

They would be ascending the mountain today and will descend tomorrow.

At the summit, they group will raise the Coalition Duchenne banner.

Duchenne muscular dystrophy is one of the most common fatal childhood genetic diseases, said Coalition Duchenne founder Catherine Jayasuriya, who would also be leading the team during the  climb.

“Twenty thousand boys are born each year with Duchenne, more than 50 each day. My 18-year-old son Dusty is one of those boys,” said Catherine.

She added that they hope to finally find a cure for Duchenne, so that boys like Dusty could live longer. Dusty has been wheelchair-bound for the last eight years.

“Duchenne is a difficult road and presents many challenges along the way. It steals many things, your ability to hug, to move, to talk, to breathe,” she said.

Catherine founded Coalition Duchenne in 2011 and information about the coalition could be garnered via http://www.coalitionduchenne.org.

Members of the coalition are from Australia, China, Europe and the United States.

When met by media members later, Catherine disclosed that they would be making the climb to Mount Kinabalu an annual affair.

“We will be climbing the mountain again next year on August 24,” she said.

She added that she considers Sabah as her home despite living in California.

“We are thinking of relocating to Sabah next year as we have a larger family here,” she said.

Catherine also said that they hope to reach out to Duchenne patients in Sabah.

“So far I have known 10 patients suffering from the same here,” she said.

She added that one out of 3,500 boys worldwide is afflicted with the disease.

Catherine also said she would be meeting with US President

Barrack Obama to update him on the climb.

Meanwhile, Tourism, Culture and Environment Minister Datuk Masidi Manjun commended the group for its show of selflessness and unity to find cure for the disease.