Hyderabad: Cure SMA Foundation, a non-profit organization dedicated to creating awareness about Spinal Muscular Atrophy (SMA), is all set to host the 2nd Edition of the "Run/Ride for SMA" on 4th August 2024 at the Gachibowli Stadium, Hyderabad.
SMA is a rare and devastating genetic disease that affects the motor nerve cells in the spinal cord, leading to muscle weakness and progressive loss of movement. According to Dr. Ramesh Konanki, Consultant Pediatric Neurologist at Rainbow Hospital, "For every 2 and half hours, one SMA-positive baby is born in India. One SMA carrier is there in 35 to 38 persons, making it a very rare disease."
Emphasizing the importance of preventive measures, Dr. Tella Sunitha, HOD of Clinical Genetics and Fetal Medicine Specialist at the Institute of Genetics and Hospital for Genetic Diseases, said, "It is crucial for couples to undergo SMA carrier tests before marriage to prevent the occurrence of this debilitating disease."
The upcoming "Run/Ride for SMA" event aims to raise awareness about this rare condition and support affected individuals and their families. 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 with Spinal Muscular Atrophy. We are committed to creating an ecosystem for SMA in India and dream of an SMA-free world.
The event will feature a 5K run and a 10K ride, with participation open to students, youth, and the general public. Satish Pramata, regional coordinator, (Telangana &AP) Cure SMA Foundation of India, emphasized the importance of the awareness run, stating, "SMA causes muscle weakness and progressive loss of movement, affecting activities such as crawling, walking, sitting up, and swallowing. This awareness run will help us reach out to the community and garner support for our cause."
The organizing team, including Commandant N V Rama Rao, Mohsin Khan, Abiram, and Noor Mohammed, are working tirelessly to ensure the success of the event.
The 2nd Edition of the "Run/Ride for SMA" promises to be an impactful event, bringing together the community to support individuals and families affected by this rare disease.
