About Us... from the desk of the Founder & Chair
Turning of A personal tragedy into a Public crusade
I was completely jinxed when a specialist neurologist told me that ‘your son would be short lived’. He did not say anything more than that when my only son was diagnosed for muscular dystrophy.
I was aghast and jolted due to lack of information, awareness and institutional support. I had come across the term ‘muscular dystrophy’ for the first time in my life. I had to learn every single fact about muscular dystrophy on my own efforts and resources. It took more than a year for me to complete the diagnosis ever since I noticed unusual walking difficulties in my son. The first 2 years following the diagnosis were very traumatizing. Soon, I realized our existential obligation to act and fight back.
The Transformative moment
In the course of searching for a cure to my son, I was running from pillar to post and had been turning every other stone possible. During one such visit to a hospital, it had happened to me to meet with two families, who were rural poor and illiterate. My interactions with them revealed their miserable condition, while making me realize that my son and my family were blessed. At least, we had the resources to cope with, people to help, but they were completely helpless. They were exploited to an extreme that the families could not survive even beyond the life of the child. I realized that ‘muscular dystrophy’ was not all the more same to all. I realized that MD could also discriminate by gender, class, social status etc. I understood that Muscular Dystrophy could not be considered as only a medical issue but has many other dimensions beyond. Such realization drove me to establish ‘MDF INDIA’.
The Founding of MDF INDIA
It gave me the resolve to fight Muscular Dystrophy and the impetus to found Muscular Dystrophy Foundation India (MDF INDAI) in December 2000. I launched this as a movement to offer children with MD “all the good things that I was able to provide my son and those that I wanted to but could not”.
However, for managing my own time & resources between my son and ‘MDF INDIA’, I 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.
My only 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 my well paid government job and many other interests that made my son survived little beyond 17, which is rare in Indian conditions. Few days after the demise of my son, I have told to myself, “I could not save my only child. But have hundreds of children with MD. I will save them and they would give meaning to my life”. With reinforced commitment, I have restructured the organization and made it become fully operational since 14th March 2010.
Mission: The Mission of our organization emanates from this desire and could be read as, “MDFINDIA exists to ensure that muscular dystrophy patients in India enjoy equal opportunities’.
Theories of Change: All our actions are based on a two pronged theory of change as follows;
Protection: A child must be alive to avail a cure – even one day of an extended life could multiply the chances of availing a cure that is fast approaching.
Prevention: Each defective birth prevented would mean preventing a new generation of muscular dystrophy and saving the society from a ticking ‘BOMB’.
Credibility: The unshakable trust & preference over doctors by the Muscular Dystrophy patients and families from across the country is what we reckon as the credibility that MDF INDIA has earned over the years of its work. Increasing demands for our services and the articulated interests of reputed institutions to partner with us could be considered as indicators of our impact.
In a short span of 5 years, we have emerged as the single largest organization of muscular dystrophy patients in India. So far, more than 18000 patients have been registered with us for various services and the number has been fast increasing by a daily average of 6-10 new patients approaching us.
The story doesn't end here. We have very long journey to go. There estimated to be more than 1 million patients to reach out.
Founder & Chairperson