LAGUNA BEACH, Calif., June 11, 2023 /PRNewswire-PRWeb/ -- The eleventh annual Expedition Mt Kinabalu was flagged off by Datuk Christina Liew, Sabah Minister of Tourism, Culture, and Environment on June 10th from Shangri-La's Tanjung Aru Resort and Spa.
This year, Coalition Duchenne is donating RM20,000 to the Women and Children's Hospital, Sabah. The funds will go towards helping boys in Sabah with Duchenne muscular dystrophy, the most common rare disease of childhood, present in 1 in 3,500 male births. The donation will help provide Duchenne patients with equipment that they may otherwise not be able to access.
Expedition leader Catherine Jayasuiya's son, Dusty Brandom, has Duchenne. Jayasuriya always dreamed of climbing Mt Kinabalu with her children; however, because Dusty has Duchenne, he would not be able to make the climb. Jayasuriya is inspired by Dusty's resilience in the face of his challenges. At age 30, Dusty is in a wheelchair and is severely impacted by the muscle-wasting disease. Dusty is very involved in the behind-the-scenes organization of the expedition. Although he faces challenges, he lives a full and meaningful life.
Jayasuriya is moved to help boys in Sabah with the muscle-wasting disease. She met local consultant pediatric neurologist Dr. Hock Sin Heng and physiotherapist Vivienne Yong to help distribute an essential breathing device called an Ambu bag.
Coalition Duchenne's outreach initiative Duchenne Without Borders supports underserved families and boys with Duchenne. The initiative was inspired by Azmi bin George, a young boy living with Duchenne in a rural area of Sabah; this year, his two sisters Nurul and Farhan binti George are climbing in his memory.
The vision of Duchenne Without Borders is to distribute Ambu bags, bipap machines, wheelchairs, and other equipment to boys with Duchenne in communities around the world, and give them hope and a connection to treatment protocols, drugs, and research initiatives that are readily available in the United States and other developed countries. The organization is hopeful that such initiatives will move towards a future where people with Duchenne and other rare diseases will have greater access to support and treatments.
"When you pull up the most disadvantaged person, you pull up everyone," said Jayasuriya.
There is hope on the horizon for those with Duchenne. In the past few months, the US Food and Drug Administration (FDA) has been considering approval of the first gene therapy for the disease. The pharmaceutical company Sarepta Therapeutics has been trialing a viral delivery of a modified form of the gene that, when missing, causes Duchenne. Jayasuriya is advocating for Malaysian patients to have access to these potentially life-saving drugs when they become available. She has worked with pharmaceutical companies and spoken at conferences to set up trial sites in Malaysia. There are many Duchenne families in Malaysia who are following developments hoping that their sons will benefit.
"Boys and young men with Duchenne in this region need a voice and access to new drugs," said Jayasuriya.
Two fathers from Malaysian Rare Disease Society, Haji Sutan Mustaffa and Davien Low traveled from Kuala Lumpur to climb for their sons who have Duchenne. Davien Low's son, Rayce, age 11, joined for the flag-off of Expedition Mt Kinabalu.
This year's expedition includes twenty climbers from all over the world: Australia, USA, Germany, Singapore, the Philippines, Britain, France, and Switzerland. Last year, Yohan Jayasuriya joined the climb and summited cosplaying as Iron Man; this year, he will cosplay as Batman and anticipates to summit.
In 2012, in her drive to create awareness Jayasuriya, brought a film crew to Sabah for her documentary 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. Jayasuriya's father, the late Tan Sri Thomas Jayasuriya, is interviewed in the film along with other family members, doctors, and scientists.
The documentary also features Azmi Calvin bin George. "Our footage of Azmi and his family touched viewers around the world and started a conversation about the underserved population of boys and young men with Duchenne that exists in many countries. His legacy is that newly diagnosed boys will have more support and hope," said Jayasuriya.
Thank you to our sponsors and partners: Sabah Ministry of Tourism, Culture, and Environment; Sabah Tourism; Sabah Parks; Shangri-La's Tanjung Aru Resort; Sutera Sanctuary Lodges; NS Pharma; and NS BlueScope Lysaght Sabah Sdn Bhd.
About Coalition Duchenne
Catherine Jayasuriya started Coalition Duchenne with her son Dusty Brandom 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.
Coalition Duchenne and its founders have been leaders in sponsoring Duchenne research for over 25 years. The charity is one of the leading advocates for FDA approval of new treatments for Duchenne.
Coalition Duchenne recently launched Duchenne Without Borders, which supports underserved families and boys with Duchenne. Duchenne Without Borders provides boys with Duchenne in Sabah with Ambu bags and bipap machines, and provides information about Duchenne to doctors and families.
The vision of Duchenne Without Borders is to expand its outreach to underserved communities around the world, and give hope and a connection to treatment protocols, drugs, and research initiatives that are readily available in the United States and other developed countries. Duchenne Without Borders has established collaborations in India, Algeria, Cambodia, and the Philippines.
For more information about Coalition Duchenne, please visit: http://www.coalitionduchenne.org.
About Dusty's Trail: Summit of Borneo (2013)
A press kit is available for download from the Dusty's Trail website:
http://Dustystrail.org
About Duchenne Muscular Dystrophy
Primarily affecting males, Duchenne muscular dystrophy (DMD) is a rare and fatal genetic disorder that results in progressive muscle weakness from early childhood and often leads to premature death in the mid-twenties due to heart and respiratory failure. It is a progressive muscle disorder caused by the lack of functional dystrophin protein. Dystrophin is critical to the structural stability of all muscles, including skeletal, diaphragm, and heart muscles. Patients with Duchenne can lose the ability to walk as early as age ten, followed by loss of upper body strength. Duchenne patients subsequently experience life-threatening lung complications, requiring the need for ventilation support, and heart complications in their late teens and twenties. More information on the signs and symptoms of DMD can be found at: http://www.duchenneandyou.com
Media Contact
Neil, Coalition Duchenne, 1 9493750924, brandom@brooks-street.com
SOURCE Coalition Duchenne
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