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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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Motor Neuron

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.

Learn more
Newly Diagnosed

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

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

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 support for MND

Funding by the government

Research to understand the Disease

Research to understand the Disease

Access to proper treatment

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.

Dr. Alexander Thomas | President, AHPI

As President of AHPI and National Board Accredited Institutions (ANBAI), Founder-President (2012-2017) and Patron of the Consortium of Accredited Healthcare Organizations (CAHO), Dr. Thomas has effected far-reaching policy changes within the healthcare landscape, including incorporating healthcare communication among the NABH accreditation standards and in the Indian medical curricula, leading the expert group on medical education for the National Education Policy 2019 headed by Dr. Kasturirangan, and creating a national network of healthcare associations with the IMA, CII, FICCI , NATHEALTH and ASSOCHAM, a think tank on health (with NLSUI), and liaising between government and health stakeholders during the COVID-19 pandemic.

He has developed major initiatives at the State level, especially in Karnataka, and served on committees of the Union Health Ministry, NABH, HSSC, CII, FICCI, UNESCO, PHFI, and NBE.

He is a Visiting Faculty at IIM-B and NLSIU, pioneering several healthcare training initiatives.

His recent publications include books on healthcare communication and healthcare quality, and white papers submitted to the Government of India.

He was awarded the Emeritus Teacher Award by NBE (2014), the National Distinguished Services Award by the IMA (2016), and the Lifetime Achievement Award by CAHO (2018).

AHPI Founders page:

AHPI India

Online biodata:

Dr. Alexander Thomas President, AHPI

LinkedIn:

Dr. Alexander Thomas – President – Association of Healthcare Providers – AHPI (India)

Zoom Link:

NIMHANS & Dr. Shyama Narang Foundation is inviting you to a scheduled Zoom meeting.

Topic: Second International Conference on ALS/MND – “Breaking Barriers in the Treatment of MND/ALS”
Time: Jun 21st & 22nd 2023 09:15 AM India

Join Zoom Meeting
https://nimhans-ac-in.zoom.us/j/82508494791?pwd=RDhUWUxlRFo4b0dBbGNjcjBXWk84UT09

Meeting ID: 825 0849 4791
Passcode: 626500

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Meeting ID: 825 0849 4791
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Zoom Link:

Dr. Shyama Narang Foundation Conference on Awareness, Care, and Management of Motor Neuron Disease 2024 is inviting you to a scheduled Zoom meeting.

Topic: My Meeting Dr. Shyama Narang Foundation Conference on Awareness, Care, and Management of Motor Neuron Disease 2024

Time: Jun 26, 2024 09:30 AM India

Join Zoom Meeting
https://us06web.zoom.us/j/88601403765?pwd=e3bEBam2wiECJ8A6bV9gu8KKENL6uQ.1

Meeting ID: 886 0140 3765
Passcode: 2024

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