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.
Create an MND Trust Registryof 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:
Dr. Alexander Thomas President, AHPI
Dr. Alexander Thomas – President – Association of Healthcare Providers – AHPI (India)
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