Cyberabad Commissioner backs ‘Run for SMA 2025' drive
Avinash Mohanty emphasised that while SMA treatment is important, prevention through awareness and early screening is even more critical. Commending the SCSC Health Forum for organising the 'Run for SMA', he noted that such initiatives are vital, especially given the high cost of treatment. He stated that collective efforts like these reflect a commitment to positive change.
Srilakshmi Nalam, Co-founder and Trustee of Cure SMA India, announced that the Cure SMA Foundation of India, a non-profit organisation dedicated to supporting families affected by Spinal Muscular Atrophy (SMA), is organising the third edition of Run for SMA – 2025 on Sunday, 10 August at Gachibowli Stadium.
Srilakshmi stressed the necessity for collaboration among medical professionals, research bodies, corporations, and the government to create a sustainable ecosystem for rare disease families in India. While treatment options have recently become available in India, their extremely high cost renders them inaccessible to most. Hence, she added, awareness and prevention, particularly through genetic carrier screening, are crucial to reducing the disease burden in future generations.
'Run for SMA' forms part of the global SMA Awareness Month, observed in August. The run includes timed and non-timed running categories – 21K, 10K, 5K, and a 5K non-timed event – with attractive cash prizes for winners in various categories.
Dr Radha Rama Devi, Senior Geneticist and Paediatrician at Rainbow Children's Hospital, Dr Giriraj Chandak, former Chief Scientist at CSIR–CCMB, Naved Alam Khan, CEO, Society for Cyberabad Security Council, and Cure SMA India trustees Srilakshmi and Archana, along with other representatives, were present at the event.
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