Dec 13, 2023

First Ever SMA Fun Run Sees Over 1,500 Participants Raise Awareness for SMA in Malaysia

  • Over 1,500 participants ran in support of those affected and impacted by spinal muscular atrophy (SMA).
  • Proceeds from the charity run will go to SMA Malaysia, a non-profit that provides education, care and support for patients and their parents.

Shah Alam, 13 December 2023 – 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.

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.

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, Malaysia. 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 Bin Md Noh, Acting Director of IMR MOH, said:

“The response we have received from the community has been encouraging. Our initial goal of getting 1,500 participants was remarkably achieved. We would also like to thank all working committees, Novartis Malaysia and MBSA for making this event successful in raising funds for the disease.”

“SMA Fun 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.”

Puan Shakira Jamil, President of SMA Malaysia, said:

“We would like to thank the organizing committee, sponsors, and participants for supporting people with SMA. This demonstrates humanity at its best. It is indeed important for Malaysians to understand this disease to spot SMA earlier. Early interventions enable patients to achieve independence, thereby optimizing quality of life and potentially slowing disease progression.”

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.

The run was supported by Novartis as part of its initiative to help raise critical awareness that SMA patients need better support. Mohamed Elwakil, Country President of Novartis Malaysia, said:

“At Novartis Malaysia, our purpose is to improve and extend the lives of over 32 million Malaysians, including patients with rare diseases like SMA. By working together with all stakeholders, we can advance the science and practice of newborn screening, empower families with early interventions and treatments, and ultimately, make a meaningful difference in the lives of children around the world.

“Identifying SMA at the earliest stages of life allows us to optimize the potential for timely interventions, personalized treatment strategies, and improved long-term health outcomes. 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.”

 

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