
A new committee has been formed for ‘Cure SMA Bangladesh,’ the only organization in the country dedicated to the welfare of individuals affected by the rare disease, Spinal Muscular Atrophy (SMA). Hasan Mahmud, the Chief Reporter of risingbd.com, has been elected as the president, while Md Omar Faruq, finance manager of Union Limited, has been elected as the general secretary for the next two years.
Hasan Mahmud also performs as the President of the International Relations Reporters Forum (IRF), an organization for professional journalists specializing in international relations.
The committee for the 2025-2026 term was elected during the organization’s first Annual General Meeting (AGM) held on the night of January 24, 2025.
Dr. Shah Md. Helal Uddin, Additional Secretary (Budget Wing) of the Ministry of Health and Family Welfare was the chief guest at the event. Dr. Jubida Parveen, Assistant Professor of Pediatric Neurology Department of National Institute of Neurosciences and Hospital, and Mohammad Minhazur Rahman, Senior Assistant Secretary of the Ministry of Health and Family Welfare, who joined virtually as Special guests.
All of the forum’s guardians and members participated in the AGM.
In the nine-member committee, Tanzina Afrin, Senior Sub-editor of risingbd.com, was elected as the vice president, and Mohammad Saiful Alam, CEO of Win Star Container Lines, was elected as the treasurer. The five executive members are Mohammad Shahadat Hossain, Head of the Bengali department at Panjeree Publications; Professor Mohammad Maksudur Rahman Sarkar; Afrin Akhtar; Mohammad Manzurul Kader and Shahin Akhtar Shanu.
The election commission responsible for forming this committee consisted of Professor Mohammad Maksudur Rahman Sarkar, FCMA Chairman of the Accounting and Information Systems Department of Dhaka University, and prominent businessman Mohammad Saiful Alam.
Hasan Mahmud and Md Omar Faruq previously served as Vice President and Treasurer, respectively, on the former committee, which was led by Mohammad Shahadat Hossain as president and Tanzina Afrin as General Secretary.
There are 65 organizations worldwide working for the welfare of SMA patients. The Bangladeshi organization collaborates with entities such as ‘Cure SMA’ of United States, ‘SMA Europe’ etc. Cure SMA Bangladesh has partner organizations including the National Institute of Neurosciences and Hospital, Bangladesh Children’s Hospital and Institute, Al Barakah Hospital, etc.
SMA, or Spinal Muscular Atrophy, is a rare and incurable disease caused by the degeneration of motor neurons that control muscle movement. SMA is categorized into types ranging from zero to four, depending on the severity of the condition. Like many countries around the world, Bangladesh has patients suffering from this disease. However, due to a lack of awareness, a significant number of affected individuals are not receiving testing and treatment, leading to countless children succumbing to the disease due to a lack of medical care.
Cure SMA Bangladesh was established in March 2023 and has been working to raise awareness about SMA and support patients.