Pratidi

Pratidi

“Come..let’s repair the gene and start walking..” The Sanskrit word “Pratidi,” meaning “Hope,” reflects the core vision of this initiative—to bring hope and meaningful support to individuals living with challenging health conditions. The project represents the commitment to stand with people affected by Muscular Dystrophy (MD) and Spinal Muscular Atrophy (SMA), addressing both their immediate needs and long-term aspirations for better care and treatment. Pratidi is the flagship initiative of Mobility in Dystrophy (MIND) Trust implemented in 2020, focusing on raising awareness about neuromuscular diseases, supporting affected individuals, and promoting research and innovation in this field. The project works to improve the quality of life of beneficiaries by addressing various aspects such as access to treatment, assistive devices, disability-friendly environments, employment opportunities, education, and the use of technology, including artificial intelligence, to support persons with disabilities. A major focus of the Pratidi Project is increasing awareness and understanding of neuromuscular diseases within society. The initiative promotes early diagnosis, physiotherapy, and supportive care methods that can help manage the progression of these conditions. At the same time, the project recognizes the importance of mental health and psychosocial support, as emotional well-being plays a crucial role in coping with long-term illnesses. The Pratidi team has also engaged in collaborative efforts with medical professionals, researchers, and pharmaceutical stakeholders working in the field of rare diseases and precision genetic medicine. These interactions have provided valuable insights into emerging research, potential treatments, and future possibilities in gene therapy and advanced medical care for MD and SMA. As part of its awareness and knowledge-sharing efforts, the project has published an informative booklet on neuromuscular diseases, particularly muscular dystrophies. This resource serves as a useful reference for patients, families, and the public, helping to improve awareness and understanding of these conditions. Additionally, Pratidi has organized several webinars featuring medical experts, creating opportunities for direct interaction between doctors and individuals affected by MD and SMA. One of the key challenges in addressing neuromuscular diseases is the high cost of advanced treatments, including genetic testing and gene-based therapies. Recognizing this challenge, the project advocates for accessible and affordable diagnostic and treatment facilities in India. MIND Trust has emphasized the importance of providing free or low-cost genetic testing at district hospitals and medical colleges to enable accurate diagnosis and better treatment planning. In line with this vision, the Pratidi initiative has also taken steps to collaborate with leading medical institutions. MIND Trust conducted a free genetic testing campaign in collaboration with AIIMS Delhi for individuals who could not afford such tests. Although the COVID-19 pandemic affected the progress of this effort, the organization continues to work toward ensuring that genetic testing becomes accessible to all members in the near future. The Pratidi Project ultimately aims to contribute to a future where individuals living with MD and SMA receive timely diagnosis, better treatment options, and stronger societal support. By combining awareness, advocacy, research collaboration, and community engagement, the project continues to work toward building a society where these conditions no longer lead to suffering and exclusion, but are addressed with care, innovation, and hope.