23/08/2025

SATURDAY | AUG 23, 2025

COMMUNITY 7

Human chess match to ‘checkmate’ SMA disease o Association urges screening for newborns and equitable access to treatment

SUBANG JAYA: A hall at the PARC hub here was recently transformed into a 9m by 9m chessboard where 32 human “pieces” took their places. The game was Checkmate SMA, the largest human chess match to be seen in the country. It was held to send a message on spinal muscular atrophy (SMA), for everyone born with the rare genetic disease to be guaranteed care. More than 200 guests gathered to witness SMA Malaysia, a non-profit organisation supporting individuals living with SMA, set the new Malaysia Book of Records entry. Senator Isaiah D. Jacob made the first symbolic move and announced the start of the match. In her address, Dr Azlihanis Abdul Hadi, deputy director (Public

KUALA LUMPUR: The National Association of Women Entrepreneurs of Malaysia (Nawem) recently held a dialogue session with the Ministry Of Health (MoH) to reflect on the success and impact of the group’s “Medicine@Community” pilot project in Penang. Launched in July 2024, the project was designed to decentralise medication pick-up points from public hospitals to selected community pharmacies. Led by Penang Nawem chairperson Bharati Suresh Chand, the initiative focused on easing outpatient congestion at government hospitals, improving patient convenience and reducing carbon emissions through reduced travel. “This project was about putting people and the planet first. We saw an opportunity for community pharmacies to play a bigger role, while making life easier for patients – especially the elderly and those with chronic conditions,” said Bharati. The Nawem representatives led by Bharati met with MoH Deputy Director-General (Pharmaceutical Services) Dr Azuana Ramli on July 23 Anis Adilah, 26, who has SMA Type 3, later said: “Today, we created history together as SMA fighters, caregivers, volunteers and supporters became life-sized chess pieces in the Malaysia Book of Records Largest Human Chess Match. “What took place was not merely a game of chess, but a living symbol of strength, unity, and resilience within the SMA community.” Deepti Saraf, general manager of Roche Malaysia, the main event sponsor, said: “The whole society needs to work together with the SMA community to help checkmate this congenital disease. “We hope this initiative sparks not only greater understanding but also urgent conversations around

Health Medicine) of the Health Ministry’s Medical Development Division, emphasised the ministry’s commitment to systemic action for the rare disease community under the National Policy on Rare Diseases. SMA Malaysia vice-president Arfah Jamian outlined three priorities: a national newborn screening programme, public funding for approved SMA treatment and expanded caregiver support. The disease causes progressive muscle weakness, eventually leading one to lose the ability to walk, eat or breathe. Globally, there is one SMA case in every 10,000 live births. It is estimated that there are 300 to 400 active cases in Malaysia.

Participants on the giant chessboard shift from their positions according to moves made by the players (in foreground). – AMIRUL SYAFIQ/THESUN

living with the diseases and their stories. The other exhibitors included the Malaysian Rare Disorders Society and the Genetic Counselling Society, as well as SMA members. The programme closed with a panel discussion on “Life after Treatment - Hopes, Realities and Roadmaps”.

improving policies and funding to ensure long-term, equitable access to care for all patients.” The event coincided with World SMA Awareness Month and SMA Malaysia’s eighth anniversary. It also highlighted other types of rare diseases through the #RareButReal Photo Exhibition showcasing portraits of individuals

Women entrepreneur group shares success of community medication project

collection, ensuring proper handling and confirming secure delivery to pharmacists. “This is an excellent example of how a women-led NGO can deliver a real, measurable impact aligned with national sustainability and healthcare goals,” said Nawem deputy president Saliza Abdullah. The project reflects Nawem’s commitment to environmental, social and governance principles, demonstrating that entrepreneurship can be both socially responsible and transformative, she added. The association expressed hope that the pilot project will be expanded to more states and serve as a blueprint for national implementation. With over 3,000 community pharmacists distributed across Malaysia, the model has immense potential, it said. “It is our sincere belief that this project marks the beginning of a new era – one where community pharmacists are recognised as essential healthcare providers, and patients are empowered through access, education, and care – right in their own neighbourhoods.”

to discuss the project. Over 12 months, nearly 1,000 patients benefited from the service, with a total of 504 medication parcels successfully delivered to pharmacies closer to their homes. According to Nawem, this reduced over 11,000 km of travel, saved 675 litres of petrol and cut 1,785 kgCO ĸ e in emissions – the equivalent of planting 55 trees. Patients reported shorter waiting times, improved medication adherence, and greater ease in managing their health. Community pharmacists also stepped into expanded roles, offering counselling and preventive care, marking a shift toward more human-centric, decentralised healthcare. The initiative is currently extended to four facilities: the Penang Hospital, Bukit Mertajam Hospital, Seberang Jaya Health Clinic and Jalan Perak Health Clinic. Nawem sponsored and coordinated the entire logistics process – managing the safe and timely transfer of medications from the four facilities to participating community pharmacies. This included overseeing parcel

The participants from Japan posing at the historic war memorial.

Japanese students offer ‘gift of peace’ at WWII memorial

Ű BY JOSHUA CHANG newsdesk@thesundaily.com

Representation for the future – these students are, in fact, our future itself.” Their presence and the symbolic senbazuru provided a powerful moment of hope at the solemn commemoration. The event was attended by international participants, including Australian, British, New Zealander and Malaysian representatives, who also paid tribute to the sacrifices of local Sabahans during the period. One guest remarked that while the gathering remembered the fallen and the atrocities inflicted upon them, it also gave heartfelt thanks to the Sabahans for their sacrifices during the Japanese occupation, as many had risked their own lives to ensure the POWs’safety. Sandakan Memorial Day is observed on August 15 every year at the Sandakan Memorial Park. It is held in memory of the Australian and British prisoners who suffered and endured immense hardship at the Sandakan POW camp between 1942 and 1945. Approximately 1,000 POWs were forced to march a torturous 260km trek from Sandakan to Ranau. Of these, only six Australians who had escaped into the jungle survived the horrors of the camps and the gruelling ordeal. This year marks the 80th anniversary of the end of World War II in September 1945.

KOTA KINABALU: In a profound move at reconciliation with a past tragedy, a Japanese contingent that included five school students from the country made a poignant gesture at the annual Sandakan Memorial Day Service on August 15. The students presented 1,000 senbazuru , or hand-folded paper cranes, to symbolise peace, healing and hope in the Japanese tradition. The offering was to honour the memory of over 2,400 Australian and British prisoners of war who perished during the Sandakan Death Marches and brutal captivity under the Japanese occupiers during World War II. The contingent emphasised the students’ unity and readiness to fulfil three shared promises – of respect, responsibility and representation – though they hailed from different schools and cities. “Respect for the past – for all those who lost their lives during this tragic chapter of history and for the families who continue to carry their memory,” explained a message they penned. “Responsibility for the present – to learn what happened here in Sandakan, and to pass the story on with honesty and care.

The Nawem delegation led by Bharati (fifth left) with Azuana (centre) and Saliza (seventh left).