THE inaugural Spinal Muscular Atrophy (SMA) charity run in support of the community affected by this genetic disorder has attracted over 1,500 running enthusiasts who competed in the 1km and 5km run route opposite Wisma MBSA (Shah Alam City Hall).
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.
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.
Meanwhile, the run which attracted 100 associates of innovative healthcare solutions provider Novartis Malaysia and SMA advocates was graced by the Health Ministry’s deputy director general (research & technical support) Datuk Dr Nor Fariza Ngah.
Proceeds from the event will go to SMAM, a non-profit that provides education, care and support for patients and their parents. The run was supported by Novartis Malaysia as part of its initiative to help raise critical awareness that SMA patients need better support.
“Identifying SMA at the earliest stages of life allows us to optimise the potential for timely interventions, personalised treatment strategies and improved long-term health outcomes,” advised Novartis Malaysia country president Mohamed Elwakil.
“This not only benefits the affected infants but also empowers their families with the knowledge and support needed to navigate the complexities of managing a devastating rare disease like SMA.”
Currently, there is no cure available for SMA but there are therapies that can help to delay progression and relieve some symptoms. SMA is currently the leading hereditary cause of death in newborns, often due to respiratory failure. – Dec 15, 2023
