Integrated Muscular Dystrophy Rehabilitation Centre-Himachal Pradesh- CSR Projects India
 
 
 
 

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Integrated Muscular Dystrophy Rehabilitation Centre

 
 

Organization : Indian Association of Muscular Dystrophy

 
 

Location : Himachal Pradesh

 
 

Project Description

The Indian Association of Muscular Dystrophy (IAMD) was thus established in1992 to support people with MD. It is mainly run by persons living with Muscular Dystrophy. In 2013, we started construction on the Integrated Muscular Dystrophy Rehabilitation Centre (IMDRC) – “MANAV MANDIR” – in Himachal Pradesh which will provide comprehensive services to patients and suspected patients of MD. The largest facility of its kind in the country, IMDRC will feature state-of-the-art infrastructure. We envision end-to-end services: genetic testing and counselling, diagnosis, care management, rehabilitation, orientation, rejuvenation, collaborating with researchers and introducing new therapies.

All of this will be primarily being funded through CSR donations, which is our funding model. For instance, the bulk of construction has been done through funding provided by Satluj Power Corporation. The total cost of construction of the Centre is estimated to be around Rs. 16 crores. The construction work started in July 2013 and IAMD has already invested Rs. 6.20 crores in the project including a major contribution of Rs.4.13 crore from the SatlujJalVidyut Nigam Limited (SJVNL). In this sense, the project is an example of the synergy that exists between a critical social cause and CSR. Since 1993 we have reached out to 12,000 families.

IAMD is already maintaining MD clinics in Delhi and Chandigarh. With the new Centre as the hub, we aim to scale up our efforts in four directions:

 • Diagnosis and Research: IAMD has currently partnered with research entities within India to help in genetic confirmation and diagnosis. Organization has regularly hold camps for this purpose, and all of the processes we follow are based on best practices in the medical industry, including database maintenance and sample handling. In the future, we would establish national and international linkages to increase information access on the disease in India.

 • IEC and Mainstreaming services: IAMD seek to reach out to as many suspected and confirmed patients of MD in India as possible through targeted communication efforts so they can avail proper services. Organization has already established links with leading geneticists in the country for information on new research in the field to source accurate information and dispels myths. IAMD has regularly undertaken awareness campaigns, and our IEC efforts will only be stepped up.

• Rehabilitation Services: Once an MD patient is confirmed, he/she can access services at the Centre. Importantly,

o There is no Centre as of now catering to MD patients exclusively anywhere in India.

o Provision of proper therapy is important for delaying the progression of the disease.

o Provision of genetic counselling towards possible prevention of the disease in future generations is key. MD most often affects more than one member of the same family, and can be passed on from parent to child or developed first generation.

o Through the Centre, IAMD goal is to give a one-stop facility to MD patients and make available a strong support system so that they can live a life of normalcy. Given the debilitating nature of the disease, regular psychological counselling among other services will also be provided to keep the person out of depression.

 o In IAMD experience, families often do know about the condition and seek treatment which is ineffective. Organization want to remedy this situation, and support families in recognizing symptoms to seek timely help, ascertain their future, therapies and receive quality clinical information on everyday management.

 
 
 
 

Project Type : CSR

 
 

Project Donors and Partners

SJVN Power Finance Corporation, ONGC, Sai Engineering Foundation
 
 
 

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