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Dr. Shyama Narang

A bright mind, fierce activist and valiant soul,
Dr. Shyama Narang fought bravely against MND.
Although she has passed on, her memory lives
on through this Trust and the lives she touched.

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What is Motor Neuron Disease?

This is an umbrella term used for various diseases that progressively affect the nerve cells that control movement (motor neurons) and weaken the muscles.

There is no cure yet- although treatment can help improve quality of life.

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Newly Diagnosed

The diagnosis of MND can be overwhelming. Once you have the diagnosis, it might be difficult to know where to begin. Take time for yourself first to process the diagnosis, and gather as much information as you can to understand what lies ahead.

Here are some things you might consider after the diagnosis:

Start here

MND Trust Registry

We are collecting data across India from MND affected people and Caregivers. This data will help us push for better medical research, treatment and also helps us personally provide help and assistance to those that take part in the survey.

Go to MND Trust Registry

Announcing

Free Genetic Testing by IGIB

&

Free Consultation, Evaluation and Counselling for MND Patients by Experts from The Brains Hospital, Bengaluru

3RD OCTOBER TO 30TH OCTOBER 2023

In Association with

IGIB

&

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Home Collection. Read More

There is a concerning lack of awareness and research in India regarding MND (Motor Neuron Disease). Unlike countries like the US, England, Ireland, etc., India does not have an MND registry of MND patients. This means there is not enough :

Funding by the government

Research to understand the Disease

Access to proper treatment

We are a non-profit trust established to function as a support system for those with MND. Although MND does not have a cure, timely treatment can address symptoms, delay the progression of the condition, and enhance the quality of life. There are several conditions that mimic the symptoms of MND, which have to be ruled out when diagnosing the condition. Thus, diagnosis is done through studying the symptoms and ruling out other causes. This “wait-and-see” approach due to the lack of a definitive test early on in the condition robs the patient of precious time to treat the disease.

Internationally, there has been important research conducted to understand the disease. There have been exciting developments in the area of gene therapy and medications for MND. However, in India, pharmaceutical companies have not shown interest in the same, due to a lack of awareness of the disease.

MND Trust can help attract the attention of the pharmaceutical industry and the Government and push for better funding, research, and treatment.

To sum up the need of the hour is to:

Spread awareness of the disease.

Establish dedicated multidisciplinary MND clinics to aid early diagnosis and treatment.

Create an MND Trust Registry of MND patients and use it to push for better research and funding.