At the Movenpick Hotel in Islamabad, the Strive Eradication of Disability Foundation unveiled its SMA Endgame 2030 roadmap, setting a national agenda to prevent, diagnose and treat Spinal Muscular Atrophy across Pakistan. The event titled ‘From Possibility to Policy: Shaping the SMA Future’ drew medical experts, government officials and philanthropists to chart concrete steps toward eliminating SMA as a fatal childhood condition.<\/p>\n
STRIVE founder and CEO Muhammad Yasir Khan spoke passionately from his wheelchair, urging a shift in public perception. He argued that treating disability solely as ‘divine will’ prevents action and access to solutions, calling disability a biological condition that demands medical and legislative responses. He paid tribute to global gene therapy advances and warned that children in Pakistan are dying because families cannot afford continuous treatment, pressing the KP government to adopt sustained, institutional support.<\/p>\n
Health Minister of Khyber Pakhtunkhwa acknowledged gaps in awareness and pledged government support. He said the provincial cabinet’s special committee will consider financial assistance for high-cost diseases not covered by the standard Sehat Card and that a meeting with the Chief Minister will be arranged to move from short-term relief to a long-term cure strategy in line with the SMA Endgame roadmap.<\/p>\n
Waseem Rafiq, STRIVE’s program manager, outlined the five-year SMA Endgame plan and noted that the foundation has already sponsored 31 treatment cycles for 16 patients at roughly PKR 1.1 million per cycle. The strategy centers on prevention through mandatory pre-marital genetic screening, diagnosis via institutionalized newborn screening, and treatment by establishing a pooled structural fund to replace individual fundraising appeals.<\/p>\n
Clinical speakers underscored urgency with clear timelines. Dr Gul-e-Sahar highlighted that one in 54 Pakistanis is an SMA carrier and warned clinicians not to dismiss ‘floppy babies’ as merely delayed milestones, stressing that ‘time is motoneuron.’ Dr Wasim-ur-Rehman explained that in Type 1 SMA, up to 95 percent of motor neurons can be lost by six months, advocating immediate SMN1 testing and prenatal CVS at 11 to 12 weeks to enable timely intervention.<\/p>\n
Doctors shared encouraging treatment outcomes as part of the SMA Endgame narrative. Dr Athar Khalili described marked improvements with Risdiplam, citing CHOP INTEND gains that transformed formerly immobile infants into children who can sit. Dr Ihab Azim emphasized a shift from purely palliative care toward functional optimization, recommending respiratory support such as BiPAP and therapies including aquatic rehabilitation to prevent deformities and improve quality of life.<\/p>\n
Philanthropists and families reinforced the human stakes. Majid Qureshi urged moral and financial backing for the campaign, while Saleemuddin Feroz announced plans to expand STRIVE’s work to Karachi in collaboration with Indus Hospital and his nursing institutes. Father Haris Tariq gave an emotional testimony about his child Dastan, whose speech and motor skills improved after treatment arranged by STRIVE. STRIVE spokesperson Dr Nisar appealed to the audience’s conscience, calling attention to a decade-long struggle to save children from preventable deaths.<\/p>\n
Tech educator Sir Rehan Allahwala challenged societal mindsets, praising STRIVE’s use of AI and technology and arguing that Pakistan’s greatest barrier is a mindset that limits problem solving. The conference closed with a collective commitment from stakeholders to push the SMA Endgame forward through legislation, newborn screening, genetic counseling and pooled funding so that SMA no longer equals a death sentence in Pakistan.<\/p>\n","protected":false},"excerpt":{"rendered":"
STRIVE launches SMA Endgame roadmap to mandate screening, newborn diagnosis and pooled treatment funds by 2030 in Pakistan.<\/p>\n","protected":false},"author":7,"featured_media":17300,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3],"tags":[],"class_list":["post-17301","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health-education"],"_links":{"self":[{"href":"https:\/\/www.peakpoint.pk\/en\/wp-json\/wp\/v2\/posts\/17301","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.peakpoint.pk\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.peakpoint.pk\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.peakpoint.pk\/en\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/www.peakpoint.pk\/en\/wp-json\/wp\/v2\/comments?post=17301"}],"version-history":[{"count":1,"href":"https:\/\/www.peakpoint.pk\/en\/wp-json\/wp\/v2\/posts\/17301\/revisions"}],"predecessor-version":[{"id":17302,"href":"https:\/\/www.peakpoint.pk\/en\/wp-json\/wp\/v2\/posts\/17301\/revisions\/17302"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.peakpoint.pk\/en\/wp-json\/wp\/v2\/media\/17300"}],"wp:attachment":[{"href":"https:\/\/www.peakpoint.pk\/en\/wp-json\/wp\/v2\/media?parent=17301"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.peakpoint.pk\/en\/wp-json\/wp\/v2\/categories?post=17301"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.peakpoint.pk\/en\/wp-json\/wp\/v2\/tags?post=17301"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}