The Centre for Genetic Disorders (CGD) led by Prof Parimal Das and Prof Ashok Kumar, Institute of Medical Science (IMS), Banaras Hindu University (BHU), in a collaborative effort with the Special Abled Foundation and Prof SP Ray Chaudhuri Memorial Foundation organised a comprehensive one-day awareness programme on muscular dystrophy under the aegis of ‘Mission Programme on Paediatric Rare Genetic Disorders’. This event aimed to raise awareness about muscular dystrophy, emphasising the significance of early detection, prevention, and community support. About 20 muscular dystrophy patients and their family members joined the programme offline.
The event commenced with a warm welcome to the guests, followed by a floral tribute and garlanding ceremony in honour of Pt Madan Mohan Malaviya. Prof Parimal Das delivered the welcome address, setting a tone of empathy and inclusivity.
Chief guests Prof SC Lakhotia and Prof AN Gangopadhyay emphasised the importance of genetic testing in disease prevention, urging society to eliminate the taboo associated with such testing encouraging more people to come forward for genetic testing. Dr Akhtar Ali, Coordinator, CGD, shared the organisation’s ongoing efforts in diagnosing and supporting patients referred from IMS (BHU) for genetic testing and their families affected by muscular dystrophy.
Prof Rajiva Raman gave an insightful public awareness lecture, which delved into the scientific basis of the disease, explaining how minor mutations can lead to debilitating conditions. He also highlighted the latest therapies and treatment options available, offering hope to affected individuals.
NGO founders Dr Uttam Ojha of Special Abled Foundation and Dr Tulsi from DISCC shared valuable insights on disease management and the importance of rehabilitation. Dr Ojha emphasised government relief grant schemes and stressed the necessity of collaboration between scientists, clinicians and patient families to expedite drug approvals. Dr K Thangaraj, former Director, CDFD and JC Bose Fellow of CSIR CCMB Hyderabad and Dr Ashwin Dalal, Coordinator of the Mission Programme shared their thoughts online. Dr Subha Phadke, SGPGIMS, Lucknow also shared her message for the participants.
A pivotal moment in the programme was the panel discussion on ‘Muscular Dystrophy: Current Challenges and Steps Towards Disease Management’ moderated by Dr Chandana Basu. This panel had representation of clinicians, researchers, and affected families and allowed interaction and opportunity to ask questions. The panel, comprising experts like Dr Tulsi, Dr Deepika Joshi, Prof Rajiva Raman, Prof Ankur Singh, Dr Akhtar Ali and Dr Neela Visha Lakshmi provided valuable insights, fostering an informative and interactive session. A lot of myths and stereotypes related to muscular dystrophy were addressed.
All the patients were given a custom designed coffee mug. The programme ended with a vote of thanks by Dr Garima Jain, MPDF,BHU.