SMA awareness run to be held in Hyderabad on August 6
Cure SMA India, an NGO dedicated to creating awareness about Spinal Muscular Atrophy, unveiled the poster for the awareness run on this rare disease
Hyderabad: Cure SMA India, an NGO dedicated to creating awareness about Spinal Muscular Atrophy, unveiled the poster for the awareness run on this rare disease being organised at Necklace Road on August 6 at 6 am.
The poster launch on Saturday was attended by CCMB Scientist, Dr. Giriraj R Chandak, Co-Founder, Director, Patient Advocacy, Cure SMA Foundation of India, Srilakshmi Nalam, Regional Coordinator, Cure SMA, Satish P, Runner & Yoga Trainer, Santoshi Tamlurkar.
Dr. Giriraj R Chandak explained that Spinal Muscular Atrophy (SMA) is a genetic disease that weakens motor nerve cells in the spinal cord, leading to the loss of physical strength, the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants and is caused by a mutation in the survival motor neuron gene 1 (SMN1).
Srilakshmi Nalam elaborated on their NGO’s efforts, including family counselling, genetic counselling, SMA Clinics, financial support, and awareness activities, all aimed at helping patients with SMA.
The diagnosis of SMA brings life-changing circumstances, leading to extreme stress, worry, and frustration for affected individuals and families during the diagnostic journey. Cure SMA India is committed to doing their best to support these families, a press release said.
