Thousands Join SMA Fun Run to Raise Awareness for Spinal Muscular Atrophy

• The event was held in conjunction with the Sukan Negara Celebration.
• Proceeds from the charity run will go to SMA Malaysia (SMAM), a non-profit organization dedicated to supporting SMA patients and their families.

Shah Alam, 22 October 2024 – The Institute for Medical Research (IMR), National Institutes of Health under the Ministry of Health (MOH), in collaboration with Majlis Bandaraya Shah Alam (MBSA), Research Officers Association of MOH (PENYELIDIK KKM), SMA Malaysia (SMAM), and Novartis Malaysia successfully hosted the second annual SMA Charity Fun Run to raise awareness and support the community impacted by Spinal Muscular Atrophy (SMA). 

The event, themed “Together We Care,” coincided with the Sukan Negara Celebration, reinforcing 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; 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.

Spinal Muscular Atrophy

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 will be donated to SMAM, an organization that provides essential education, care, and support for SMA patients and their families.

Dr. Mohd Fairulnizal Bin Md Noh, President of PENYELIDIK KKM, expressed his gratitude for the event’s success, stating:

“We are humbled by the overwhelming support shown by the public for this year’s SMA Fun Run. The participation of over 2,000 people, highlights the growing awareness of SMA in Malaysia. We extend our heartfelt thanks to all who made this event possible, including Novartis Malaysia and MBSA, for their invaluable support. Together, we can continue educating Malaysians on the importance of early detection and intervention for SMA.”

Puan Shakira Jamil, President of SMA Malaysia, added:

“The spirit of togetherness shown by everyone at this year’s SMA Fun Run is truly heartwarming. Events like this allow us to shed light on SMA and the challenges faced by those living with it. Early diagnosis can significantly impact the patient’s journey, helping them live more independent and fulfilling lives. We deeply appreciate the community’s support, which allows us to continue our work of raising awareness and providing crucial support for SMA patients and their families.”

Although there is no cure for SMA, early interventions—such as physical therapy and advanced treatments—can help manage symptoms and enhance quality of life. SMA remains the leading genetic cause of infant mortality, often due to respiratory failure. Early diagnosis, including respiratory muscle function studies, physical and occupational therapy assessments, and x-rays, is vital for determining the most appropriate treatment plans for each patient. These interventions may include physiotherapy, the use of wheelchairs, bracing, spinal surgery, and nutritional support.

Novartis

Novartis, a global healthcare leader, supported the event as part of its ongoing commitment to improving awareness and care for SMA patients.

Mr. Jegatheswaran Panderengen, Country Head of Public Affairs at Novartis Malaysia, emphasized the importance of the event:

“As we gather for the second SMA Fun Run, I am truly inspired by the strength and resilience of the Spinal Muscular Atrophy (SMA) community. 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.

At Novartis, we are committed to reimagining 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.

It is now crucial that all key stakeholders, both public and private, collaborate to co-develop a sustainable funding model to ensure these treatments are accessible. Together with partners like IMR and SMA Malaysia, we can drive early diagnosis and better care for the SMA community.

The SMA Fun Run 2024 serves as a powerful reminder of the impact we can achieve when communities unite for a greater cause, helping to ensure that SMA patients receive the support and care they deserve.

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