Sharing Our ALS Story

Movie to share beautiful life, challenges and celebrations of 40 ALS Warriors, members of ALS Care and Support Foundation, India , To create awareness about ALS, share Community support and care activities and demands from Govt.

Requesting All Healthcare companies to pursue research on cure of ALS, as its been more than a century that we know about ALS, still we do not have effective treatment.

First time I heard about ALS, is when I heard about great Scientist Stephen Hawking, I was appalled, second time I came to know more about ALS, is through a Movie called Tuesdays with Morrie, which is a real life story of Professor Morrie Schwartz, a lovely inspiring movie.

A decade later, in early 2019 my own father was diagnosed of ALS, he is very hardworking person with clean habits, We (three children) were shocked and dismayed. We knew what exactly he would go through and how difficult it would be. We thought, we will give our best to our father, who loved and cared for us selflessly.

Immediately I searched for a Support group in India. I'm glad to find ALS Care and Support Foundation, India . The founders Satvinder Kaur and Sukhvinder Kaur taught us so many important things like good Nutrition, High Protein Diet, Speech and Swallowing Therapy, Neuro-Physiotherapy, early use of Home Ventilator, early placement of PEG feeding tube. Now we set up mini-ICU with all required Equipment at home. As its meaningless to stay for long at hospital on life support, amidst mounting hospital bills and away from family. I thank ALS Care and Support India for their guidance, support and emotional strength during tough times. I also want to thank all the expert Multispecialty Doctors: Dr Subba Reddy (Head of Critical Care), Dr Sudhir Kumar , Dr Sai Praveen Haranath , Dr K S Somashekhar from Apollo Hospitals , Jubilee Hills Hyderabad, who are treating my father at various junctures of the ALS Journey.

Here is the movie Dear Zindagi of ALS Warriors India. My father's introduction is at 2:49 mins.

https://www.youtube.com/watch?v=IAIu82NkMNM

Once again requesting Healthcare and Pharma companies to work towards cure and treatment of terrible disease ALS.

Also, we are requesting Government of India to support research to find the cure for ALS, to include ALS in rare diseases, to provide special insurance coverage to Patients with ALS, and also provide funding to buy all necessary machinery for patient management at home which cost over few lakhs.

Thank you!!!

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