1500 run in support of those impacted by spinal muscular atrophy
December 14, 2023
Over 1,500 running enthusiasts, including 100 Novartis associates and SMA advocates completed the 1km and 5km run route opposite Wisma MBSA in support of the cause.
The Institute for Medical Research (IMR) Ministry of Health (MOH), Majlis Bandaraya Shah Alam (MBSA), Researchers Association of MOH, as well as SMA Malaysia (SMAM), organized the first Spinal Muscular Atrophy (SMA) charity fun run in support of the community affected by this genetic disorder. Themed "Together We Care", the run aims to raise awareness and educate the community on how to spot symptoms, manage them, and act fast through early detection, treatment and interventions.
Neuromuscular disorder Spinal Muscular Atrophy (SMA) is a rare genetically inherited neuromuscular disorder that affects the motor nerves. SMA occurs when a baby inherits two faulty copies of the Survival of Motor Neuron 1 (SMN1) gene – one from each parent. There is a wide variability in age of onset, symptoms, and rate of progression in the different forms of SMA. While it does not affect an individual’s cognitive ability, the progressive muscle weakness impacts physical activities such as breathing, swallowing, crawling/walking, head control and overall movement. It is therefore essential that SMA is detected early for the individual to commence supportive treatment to achieve a better quality of life. SMA fun run Over 1,500 running enthusiasts, including 100 Novartis associates and SMA advocates completed the 1km and 5km run route opposite Wisma MBSA in support of the cause. This event was graced by Datuk Dr Nor Fariza Ngah, Deputy Director General (Research & Technical support), MOH. Proceeds from the run will go to SMAM, a non-profit that provides education, care and support for patients and their parents. Dr Mohd Fairulnizal Md Noh, Acting Director of IMR MOH said the run is not just a race but a collective effort to bring forward and create awareness on SMA and the challenges that those affected by this rare disease face. By understanding the importance of early detection and intervention, we can significantly impact the lives of those battling this genetic disorder. Currently, there is no cure available for SMA, but there are therapies that can help to delay progression and relieve some symptoms. SMA is the leading hereditary cause of death in newborns, often due to respiratory failure. Early diagnosis and thorough investigations, including respiratory muscle function studies, physical and occupational therapy assessments and x-rays of the hip and spine, are essential to the overall evaluation of SMA patients. These assessments help determine the most suitable treatments and aids for each patient, such as physiotherapy, wheelchair use, bracing, spinal surgery, and nutritional support. |
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