Hyderabad: SMA is a rare and devastating genetic disease that affects the motor nerve cells in the spinal cord, leading to muscle weakness and gradual loss of movement. The programme aims to raise awareness about this rare condition and provide support to affected individuals and their families. According to Dr Ramesh Konanki, Consultant Paediatric Neurologist, Rainbow Hospital, “An SMA positive baby is born every two and a half hours in India. One in 35 to 38 individuals is an SMA carrier, making it a very rare disease.”
Emphasising on the importance of preventive measures, Dr Tella Sunitha, HOD, Clinical Genetics and Fetal Medicine Specialist at the Institute of Genetics and Hospital for Genetic Diseases, said, “It is important for couples to undergo SMA carrier testing before marriage to prevent the occurrence of this debilitating disease.” Srilakshmi Nalam, Co-founder, Trustee and Director of Patient Advocacy at Cure SMA Foundation of India, said, “Our NGO is dedicated to providing family counselling, genetic counselling, SMA clinics and awareness activities to help patients suffering from Spinal Muscular Atrophy.” The second edition of the “Run/Ride for SMA” promises to be an impactful event, bringing the community together to support individuals and families affected by this rare disease. For more information and details, visit the website curesmaindia.org.
