Dusty is my daily inspiration and he inspires everyone he knows as he overcomes personal adversity with a smile on his face
NEWPORT BEACH, Calif. (PRWEB) July 18, 2019
World renowned two-time Everest summiter Ravichandran Tharumalingam, who is also known as “Ravi Everest,” will be joining forces with California-based charity Coalition Duchenne for its 9th Annual Expedition Mt. Kinabalu in Sabah, Malaysia, to be held from July 20-22nd. Coalition Duchenne raises awareness and funding for Duchenne muscular dystrophy and was founded by Sabahan Catherine Jayasuriya.
Jayasuriya, who lives in California, grew up in Kota Kinabalu and always dreamed of taking her children to the summit of its sentinel mountain. Her son, Dusty Brandom, has Duchenne and would never make the climb. At 26, Dusty is in a wheelchair and severely impacted by the muscle wasting disease. He travelled to Sabah in 2011 to visit his grandfather Tan Sri Thomas Jayasuriya but is now too physically impacted to make the long journey.
“Their bodies fail them but their mind and dreams are strong,” said Jayasuriya. “Dusty is my daily inspiration and he inspires everyone he knows as he overcomes personal adversity with a smile on his face. I climb for him.”
Dusty and the challenges faced by boys and young men with Duchenne have inspired Ravi Everest to become involved with the cause. His global ambitions match Coalition Duchenne’s goal of raising global awareness about Duchenne. Ravi Everest has climbed mountains all over the world proudly flying the Malaysian flag. He is currently working on the “Seven Summits Challenge,” which is a quest to climb the highest mountains on each continent, as well as the “Eight Thousander” challenge of climbing all 14 mountains over 8,000 meters. To top it all he is committed to achieving the “Grand Slam,” which adds the North Pole and the South Pole to the Seven Summits.
Ravi Everest has successfully conquered Mt. Everest twice, once in 2006 and again in 2007. Throughout his climbs he has endured many challenges, such as near-death in an avalanche on Mt. Manaslu, in Nepal in 2012, and losing eight fingers to frostbite on Everest in 2006. Despite these challenges, he continues to push himself to climb the most challenging mountains and inspire others. As a motivational speaker, Ravi wishes to inspire everyone to achieve the summit of their dreams.
Jayasuriya believes strongly in acting locally but thinking globally. She is an advocate for Malaysian patients to have access to drugs for Duchenne currently being developed in the US and Europe.
“Boys and young men with Duchenne in this region need a voice and access to new drugs,” said Catherine.
Validating Jayasuriya’s advocacy, a pioneering Duchenne clinical trial is recruiting patients at two sites in Malaysia. PTC Therapeutics, a US-based biopharmaceutical company, is the sponsor of the clinical trial. Investigators are looking for boys with Duchenne aged five and above who still have the ability to walk. The study examines whether the PTC drug ataluren can delay Duchenne progression and maintain patients’ ability to walk, run, and climb up and down stairs over a period of 144 weeks. The safety of ataluren is also being assessed.
The Principal Investigators at the two clinical trial sites in Malaysia are Teik Beng Khoo, MD at Kuala Lumpur Hospital, and Meow Keong Thong, MD at University Malaya Medical Centre.
It is hoped that the results of this trial will drive better understanding of Duchenne and its treatment, and ultimately benefit future patients.
Dusty and his 93-year-old grandfather, Tan Sri Thomas Jayasuriya, are featured in Catherine Jayasuriya’s award-winning film Dusty’s Trail: Summit of Borneo. The 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 an important message of hope in the face of adversity, and shows the beauty of Sabah and its people to the world.
“I’m inspired by the determination of boys and young men with Duchenne like Dusty,” said Ravi Everest.