Genesis

The genesis of Muscular Dystrophy Foundation India (mdfindia): Though the founder (Mrs.G. Renganayaki) happened to be a development worker, it wasn’t a natural response for her to found ‘mdfindia’ when her only son was diagnosed of Muscular Dystrophy in the year 1998. She was aghast and shaken due to lack of information, awareness and institutional support. The first 2 years following the diagnosis were very traumatizing. Soon, she and her family realized their existential obligation to act and fight back. Such realization drove the mother to establish ‘mdfindia’ in December 2000, by joining hands with some like minded individuals from different walks of life. However, for her struggles in managing time & resources between her son and ‘mdfindia’, she could not do much except for writing awareness-articles for the print media; identifying similar children, offering information services and physiotherapy services in a small way.. During this period, mdfindia was also inducted as a member of the “World Alliance of Neuromuscular Disorder Associations (WANDA).

The founder’s son passed away on August 26, 2009 after unbearable sufferings especially in the last two months of his life. He was 17 years and 5 months then. It was the compromise of the founder that made her son survived little beyond 17, which is rare in Indian conditions. This was realized by the fact that 5 children in the age group of 12-13 died during 25th August and 2nd October, in and around Madurai alone, the home town of the founder.

Much against the advice of family members and friends, the founder and her spouse had made the informed choice of not going in for another child, but rather committing themselves   to the cause of helping the MD children and their families across the country.

Besides, through the awareness work the founder had done these years, the demise of her son drew wide media attention, which brought hundreds of the parents of MD children in contact with her. This, presumably, did reinforce her commitment. Subsequently, mdfinda had a series of consultations with over 200 parents in 2 months time. This has resulted, first in reconstituting the board of trustees of ‘mdfindia’ to become an exclusive body of parents/patients of MD, in 2009. Secondly, it helped the organization fine tune/evolve its future strategies, identify & prioritize the needs and develop an action plan in the forma of a strategic plan document which could be accessed in this website.