A coalition of medical experts, government officials and philanthropists gathered at the Movenpick Hotel in Islamabad as STRIVE unveiled its national roadmap, SMA Endgame 2030, aimed at preventing, diagnosing and treating Spinal Muscular Atrophy in Pakistan.
Muhammad Yasir Khan, STRIVE founder and CEO, spoke from his wheelchair and rejected fatalistic views about disability, saying disability is a biological defect, not just destiny. He urged legislation and sustained state support, warning that children continue to die because families cannot afford life-saving medication.
The KP Health Minister, acknowledged that STRIVE’s advocacy had highlighted the severity of SMA and pledged that the provincial cabinet’s special committee will consider financial assistance for high-cost conditions not covered by the Sehat Card. Dr. Syed Ijaz Ali Shah, chief of health sector reforms in KPK, also committed state resources to combat the genetic disorder.
STRIVE disclosed it has sponsored 31 treatment cycles for 16 patients at roughly PKR 1.1 million per cycle and outlined a five-year plan under the SMA Endgame initiative focused on mandatory pre-marital genetic screening, institutionalizing newborn screening and creating a structural pool fund to replace ad hoc fundraising appeals.
Clinicians on the panel pressed for urgent action. Dr. Gul-e-Sahar warned that one in 54 Pakistanis is a carrier of SMA and implored general practitioners to investigate floppy infants promptly, stressing that time is motoneuron. Dr. Wasim-ur-Rehman noted that Type 1 SMA can destroy 95 percent of motor neurons by six months and recommended immediate SMN1 genetic testing and prenatal CVS at 11–12 weeks.
Dr. Athar Khalili reported encouraging results with Risdiplam, citing improved CHOP INTEND motor scores that enabled previously immobile children to sit. Dr. Ihab Azim described a shift from palliative care to functional optimization, highlighting aquatic therapy and respiratory support such as BiPAP to prevent deformities and improve quality of life.
Philanthropists also pledged support. Saleemuddin Feroz announced plans to expand STRIVE’s reach to Karachi with collaborations involving Indus Hospital and nursing institutes. Parent testimony from Haris Tariq recounted how his child Dastan regained speech and milestones after receiving medication organized by STRIVE.
STRIVE’s spokesperson Dr. Nisar appealed for sustained public and governmental backing and likened Yasir Khan’s work to national humanitarian icons. Tech educator Sir Rehan Allahwala urged a mindset change, saying the country’s greatest disability is its approach to problem solving, and praised STRIVE for using AI and technology in the SMA Endgame strategy.
Speakers agreed that the SMA Endgame requires coordinated policy, funding and early screening to ensure that SMA is no longer a fatal diagnosis in Pakistan, calling on provincial and federal authorities to institutionalize long-term prevention and treatment plans.
