managed by L. Stanislas (Communication)
Genesis: ‘Muscular Dystrophy Foundation India’ is the single largest organization that works for muscular dystrophy in India. MDFINDIA was founded by Ms. G. Renganayaki – a mother who lost her only son for muscular dystrophy. She launched this as a movement to offer children with MD “all the good things that she was able to provide her son and those that she wanted but could not”.
About Muscular Dystrophy: As you might be aware, muscular dystrophy is an incurable genetic disorder (NOT a disease) that has been categorized into several types. While DMD is terminal, invariably the entire types make one’s life miserable. Poverty makes the case even worse. Although muscular dystrophy is incurable, the scope for reducing disability, improving quality of life and preventing further inheritances are very high. The socio-economic, cultural and psychological issues surrounding muscular dystrophy in India are even worse than the disorder as such. The fact that DMD children in India die at least 10 years in advance to their counterparts in developed countries and the most common instances of 3 or more MD children within a family would speak for the Indian context.
About MDF INDIA: It is therefore, MDF INDIA as a parent’s organization has been striving to help muscular dystrophy patients and their families with a variety of services aiming at comprehensive rehabilitation of a child that encompasses; Health & medical services, Education & life skills, and self supportive. To this effect, our services include; information support, knowledge building, awareness raising, psycho-social and genetic counseling, medical care & support, educational & income generation support, access to stem cell therapy trials, campaigning & advocacy.
The number of patients registered with us has just crossed 4000, from across the country. Increasing number of patients is being referred to us by doctors, NGOs and institutions. Given the estimate of 600,000 patients in India, we have a challenging task ahead. As you are aware, muscular dystrophy is a virgin field and obviously the needs and scope for interventions are high.