This article is reprinted from Hello Sabah.
As part of the 12th annual Coalition Duchenne Expedition Mt Kinabalu, which will be flagged off by Datuk Christina Liew, Sabah Minister of Tourism, Culture, and Environment on July 13th from Shangri-La’s Tanjung Aru Resort and Spa, there will be a Wearable Robot Exoskeleton (WRE) on display.
This WRE is being used by the family of Rayce Low Rok Chun who lives in Kuala Lumpur and has Duchenne Muscular Dystrophy, the most common genetic childhood disease affecting 1 in 3,500 male children. Rayce’s family are kindly sharing the futuristic prosthetic device at the event. The WRE is by RoboCT Group based in Hangzhou, China.
“I heard about an Afghan wheelchair basketball player using the Exoskeleton to stand up and walk at the 2022 Hangzhou Para Games,” said Alice Tan, Rayce’s mother, when asked how she had the idea about getting a WRE for Rayce.
While this technology will hopefully make a large impact in the lives of those with Duchenne, it is not yet widely available and the technology is constantly improving. As people await drug developments, it is useful to have advances in other technologies.
Rayce, 12, a wheelchair user, said about his WRE, “It’s good to be able to see things from a higher view and feel my actual height.”
Catherine Jayasuriya, the founder of Coalition Duchenne and leader of the Expedition Mt Kinabalu charity climb, advocates for Malaysian patients to have access to new technology and potentially life-saving drugs.
“There are many Duchenne families in Malaysia who are following developments like gene therapy, which was recently approved in the US as a treatment for Duchenne. Duchenne families are hopeful that their sons will be able to benefit. We must move toward equity in resources. We need to include everyone, not just those in the US and Europe, as these drugs are approved,” said Catherine.
The WRE can potentially assist in activities in the daily lives of people with Duchenne and keep limbs from atrophying due to non use, and it can also aid in circulation. This technology is unique in that it allows users to use their own limbs, as opposed to external robotic grippers that are controlled by a joystick, or using splints. Previously, there have been technologies such as a robot arm that a user can control, but it required muscle strength that some people with Duchenne do not have. WREs offer the promise of supporting the impaired motor function of those with Duchenne, and potentially allow them to move freely with the assistance of the device, which is something that most of us take for granted.
SOURCE Coalition Duchenne
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 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
