Coalition Duchenne will be organising a Duchenne muscular dystrophy awareness campaign expedition to Mount Kinabalu Sabah on the 24th of August 2012. There will be 60 international climbers participating in the expedition. This expedition is a part of a global Duchenne muscular dystrophy awareness campaign.
The climbing expedition will be the group’s second global event in raising Duchenne muscular dystrophy awareness. The group’s first expedition to climb Mount Kinabalu was on the 9th of September 2011 where 35 climbers scaled the summit and planted the Coalition Duchenne flag there.
Catherine Jayasuria is the founder and executive director of this US-based group leading this second expedition to Mount Kinabalu . Catherine Jayasuria has a 19 year old son suffering from Duchenne muscular dystrophy named Dusty Brandom. She stated that the expedition group is making its effort to raise global awareness on Duchenne muscular dystrophy. She is hoping that the awareness will push forward research for the treatment of Duchene muscular dystrophy.
Catherine Jayasuria’s idea of climbing Mount Kinabalu stems from her desire for Dusty to climb the mountain together with her when he is old enough to do so. Due to his muscular Duchenne dystrophy, he is unable to climb. This second expedition to climb Mount Kinabalu will be on behalf of Catherine Jayasuria’s son and all Duchenne muscular dystrophy patients.
This climb to Mount Kinabalu will also be in honour of the memory of those who have succumbed to the disease. Catherine Jayasuria is hoping that they will raise global awareness on muscular Duchenne dystrophy by reaching the summit of Mount Kinabalu . This will increase the research funding in discovering treatment of Duchenne muscular dystrophy.
Catherine Jayasuria also noted, apart from the expedition to Mount Kinabalu on the 24th of August, the Music Power event that will be held in California this November has also managed to raise the money to fund the research efforts to find better treatment for Duchenne muscular dystrophy.
Dusty, diagnosed with the disease at the age of 6, is currently taking part in Phase 2b the US Food and Administration (FDA). This phase involves testing PTC Therapeutics’ experimental drug for the treatment of Duchene muscular dystrophy. The experimental drug, altaluren, is designed to help treatment for Duchenne muscular dystrophy.
Dusty’s participation of Phase 2b has required this wheelchair-bound teenager to take hundreds of blood tests, four muscle biopsies and to travel all over the United States in support of this trial drug which could be useful for patients in the treatment of Duchenne muscular dystrophy. Most notably, Dusty has even managed to meet with US President Barack Obama last year.
Duchenne muscular dystrophy is a progressive childhood terminal disease that debilitates the body. What causes Duchenne muscular dystrophy? This disease is an inherited disorder, caused by a defective protein muscle gene, which progressively weakens the muscles. An infant with a family history of Duchenne muscular dystrophy carries the risk of contracting it. Due to its genetic structure, only males are affected by the disease. It occurs in about 1 of every 3600 male infants. Females however can become carriers of the disease. Sons of carriers have a 50% of contracting this disease.
The symptoms include muscle weakness, fatigue, walking and learning difficulties. These symptoms will normally appear before the patient is 6 years old. This will lead to worsening conditions. Many patients would die by the age of 25 due to lung failure. Duchenne muscular dystrophy has no known cure at this moment. Treatment for Duchenne muscular dystrophy is primarily aimed to control the symptoms in order to improve the patient’s quality of life. By control, it does not mean complete cure for muscular Duchenne dystrophy.
Since Duchenne muscular dystrophy is not well-known by the general public, Coalition Duchenne is hoping that the global awareness campaign on the severity of this disease will be successful leading towards more public support to patients and thus making greater funding available in researching treatment for Duchenne muscular dystrophy.