THE Institute for Medical Research (IMR) alongside the Shah Alam City Council (MBSA), the Health Ministry’s Research Officers Association, the Spinal Muscular Atrophy Malaysia (SMAM) and Novartis Malaysia have recently hosted the second annual SMA Charity Fun Run.
Aimed to raise awareness and support the community impacted by SMA, the event themed Together We Care has reinforced a national effort to SPOT symptoms, MANAGE them and ACT FAST through early detection, treatment and interventions.
SMA is a rare, genetically inherited neuromuscular disorder that affects motor nerves, leading to muscle weakness and impacting essential physical activities.
SMA occurs when a baby inherits two faulty copies of the Survival of Motor Neuron 1 (SMN1) gene – one from each parent.
For every baby diagnosed with SMA, time is crucial for delays in treatment result in the loss of crucial motor neurons which can severely compromise the patient’s quality of life.
If left untreated, SMA can be life-threatening for some children. Therefore, early diagnosis and intervention are crucial for improving the quality of life for those affected by the condition.
With an impressive turnout of over 2,000 participants, the SMA Fun Run saw individuals from all walks of life, including over 100 Novartis associates and SMA advocates, completing the 5km and 10km routes at Dataran Kemerdekaan Shah Alam.
Proceeds from the event would be channelled to SMAM, an organisation that provides essential education, care and support for SMA patients and their families.
Novartis, a global healthcare leader, supported the event as part of its on-going commitment to improving awareness and care for SMA patients.
“As we gathered for the second SMA Fun Run, I’m truly inspired by the strength and resilience of the SMA community,” commented Novartis Malaysia’s country head (public affairs) Jegatheswaran Panderengen.
“This event transcends the act of running; it’s about raising awareness, providing support and creating a meaningful impact in the lives of those affected by SMA.”
Added Jegatheswaran: “At Novartis, we are committed to re-imagining medicine and with recent breakthroughs in SMA treatment, we are witnessing transformative improvements in patient outcomes.
“The availability of new therapies has significantly elevated both the quality of life for patients and the capacity of our health system to manage SMA effectively.” – Oct 23, 2024
