Dr Nor Fariza (fifth from left) presenting a contribution to Shakira (sixth from left) at the SMA Malaysia charity fun run, witnessed by representatives of organisers and supporters.
THE Spinal Muscular Atrophy Malaysia (SMAM) had its inaugural charity fun run with the theme “Together we care” in Shah Alam, attracting over 1,500 participants.
The event aims to raise awareness on Spinal Muscular Atrophy (SMA), how to detect and manage it as well as the need for early intervention and treatment.
SMA is a rare genetically inherited neuromuscular disorder that affects the motor nerves.
The event was supported by Institute for Medical Research (IMR), Shah Alam City Council (MBSA), Researchers Association from the Health Ministry (MOH) and Novartis Malaysia.
Proceeds from the event will go to SMAM, a non-profit group that provides education, care and support for patients and their parents.
Participants at the charity event included 100 Novartis Malaysia associates and SMA advocates who completed the 1km and 5km routes opposite Wisma MBSA.
This event was also attended by MOH deputy director- general (research & technical support) Datuk Dr Nor Fariza Ngah.
SMA patients and family members at the start of the 1km route.
The response from the community for the event was encouraging, according to IMR acting director Dr Mohd Fairulnizal Md Noh.
“We reached our target of 1,500 participants. We thank the organising committee, Novartis Malaysia and MBSA for making this event a success.
“SMA Fun Run is not just a race but a collective effort to create awareness on SMA and the challenges faced by patients.
“By understanding the importance of early detection and intervention, we can significantly impact the lives of those battling this genetic disorder.”
SMA Malaysia president Shakira Jamil said early intervention enabled patients to achieve independence, thereby optimising quality of life and potentially slowing disease progression.”
Novartis Malaysia country president Mohamed Elwakil said the company wanted to help improve and extend the lives of Malaysians with rare diseases like SMA.
“Identifying SMA at the early stages allows us to optimise and, personalise treatment strategies, and improve 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 a rare disease like SMA,” added Mohamed.
