• About Muscular Dystrophy

    Not a disease but a genetic disorder that might occur even as a fresh mutation

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  • Types of Muscular Dystrophy

    Only organization in India that cares for all types of muscular dystrophy patients

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  • Latest research

    Facilitating access to clinical trials and research updates

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  • Diagnosis

    DNA testing (MLPA) for DMD/BMD simplified

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  • Prevention

    Don’t pass muscular dystrophy on to generations. You can stop it!

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Direction

Some basic questions such as, why MDF INDIA exists, what MDF INDIA visualizes, and how & What  MDF INDIA intends to achieve are answered as follows;

Vision: The mdfindia envisions a world wherein MD patients, particularly the children and their families do not perceive MD as a threat to normal life.

Mission: To ensure that the MD patients in India enjoy equal opportunities.

Theory of Change

Our theory of change is two fold; Protection & Prevention

Protection: Must be alive to avail a cure – even one day of an extended life could multiply the chances of availing a cure. 

Prevention: Each defective birth prevented would mean preventing a new generation of muscular dystrophy and saving the society from a ticking ‘BOMB’.

Key Strategies & Approach: The key strategies of the organization could be understood at 3 levels; patient focused, family focused and issue focused. The following are the key strategies that would form the basis for all the programmatic interventions of the organization.

1. Patient focused

a. Care & Protection: The mdfindia will establish institutional services, such as, diagnostic, medical care & maintenance, emergency services and terminal care that are humane and of high quality & standards, on cost basis. Such an institutional establishment is perceived to be a pre-requisite to gain partnering and networking capacity for the organization to ensure that the model is adapted & replicated by the existing hospitals. In addition, such institutional arrangements which would maintain data base of updated profiles of all the MD patients with appropriate tracking mechanisms could alone facilitate the patients’ access to cure when available. Medical services shall also be made accessible to all other types of PWDs, on charges affordable to the under-privileged.

b. Partnership & Networking: The mdfindia recognizes the fact that its centralized facilities can not cater to all the MD patients in Tamil Nadu due to the geographical limitations. Therefore, the medical services that are to be established at Madurai will then be spread in a phased manner to all the 32 districts in Tamil Nadu, not by direct investments by mdfindia, but through collaboration with the existing hospitals/medical institutions of repute in each district. While services like diagnosis, routine care & maintenance on mutually agreed terms and emergency care could be offered by partnering hospitals at the district level, terminal care could be the sole service of mdfindia.

c. Lobbying with schools: Many MD children are forced to drop out of their schools, as the respective institutions view these students as a burden to dispense with. Although, the parents are willing to face whatever difficulties there might be in ensuring their wards of education, these schools do not want them for the reason cited before. The mdfindia will make appropriate, regular and concerted efforts to sensitize schools in a way they don’t deprive these unfortunate children of their right to education.

2. Family focused

d. Direct assistance: For the purpose of intervention, mdfindia perceives family as a unit, which requires different kinds of assistance. Right after diagnosing a child of MD, the family concerned, invariably feels helpless and even vulnerable. They just look for a handholding, and the absence of which causes a major setback to the family in many forms including that of exploitation. Therefore, mdfindia desires to offer such handholding to the families, from the day one. The forms of assistance could include, information support/services, counseling, consultation and guidance services, services required for enhancing the quality of life of the MD children, and also the income generation support to their families, if need be.

e. Prevention: As though, this could be a cross-cutting activity with its focus on the larger society too, the primary focus of mdfindia will be on the families that already have a history of MD, because they are the potential groups of spin off the disease. A rigorous campaign to make them undertake preventive tests will be performed. This may not only prevent further occurrences of the disease within the same family, but also ensure that the families have healthy children in the future. Once again, this needs to be a collaborative effort with as many numbers of hospitals and institutions as possible, committing to offer such services. The social welfare ministries of the state and federal governments will also be lobbied to take up this agenda.

3. Issue focused

f. Awareness & Sensitization: Lack of awareness among the general public: particularly those who are directly connected to the issue; and insensitivity on the part of the government as well as the private medical industry underlie the woes we have been experiencing with regard to MD. Therefore, the mdfindia will take up this as its primary and immediate agenda and perform a wide range of programs and activities to address that.

g. Mobilizing, Organizing & Networking: MD children and their families are not seen as a constituency as such deserving the attention of the state and the civil society organizations. It is time they emerged as a constituency that could influence the state and the society. Therefore, MD families and parent groups, atleast at the state level in Tamil Nadu need to be mobilized and networked for their voices to be heard by the state. A strong advocacy & campaigning for a “Positive Discrimination” of the MD patients alone could make a beginning towards ensuring legitimate and ‘equal opportunities’ to them at the national level..

h. Legal intervention: In the cases of gross-negligence on the part of the state, and social exclusions, appropriate steps including court interventions will be made by mdfindia. However, this could only be the last resort to resolve an issue.