To: Hon’ble Prime Minister Narendra Modi, Government of India

From: Gaurav , Son of an ALS Patient

Dear Prime Minister Modi,

I am Gaurav, and my 62-year-old father is suffering from Amyotrophic Lateral Sclerosis (ALS)—a disease that is not just a diagnosis, but a slow, agonizing death sentence. In mere months, ALS steals a person’s ability to walk, speak, and even breathe. It is a relentless monster that leaves its victims fully aware of their own suffering while they lose control of their bodies.

Every day, I watch my father deteriorate. He is losing his strength, his voice, and his independence, all while we helplessly watch. ALS progresses so swiftly that it feels like every minute counts. Our family is in constant fear of what will happen next. The cruelty of this disease is that we know there is no cure, and in the absence of immediate intervention, there is only a rapid, irreversible decline.

Prime Minister, I am pleading with you for urgent action. Just as you acted swiftly during the COVID-19 crisis, now is the time to show the same urgency in addressing the ALS crisis in India. ALS patients don’t have years or even months. They have a matter of weeks or days to get the care they need before it’s too late. I know firsthand the devastation of seeing a loved one vanish piece by piece before your eyes, and I don’t want this to happen to anyone else.

The Genome India Project, which I once questioned, now stands as a beacon of hope. I realize now how critical such initiatives are in finding cures for diseases like ALS. This project could help unlock the answers to why ALS progresses so quickly and how we can fight back.

I implore the Government of India to:
 1. Immediately increase funding for ALS research to find treatments that can slow or stop this disease in its tracks.
 2. Improve healthcare access and support for ALS patients, ensuring they get the treatments and care they urgently need.
 3. Raise awareness about ALS so that families like mine don’t have to fight this battle alone, without the resources or care they desperately need.

We do not have the luxury of time. If we don’t act now, it will be too late for my father—and for many others like him. Please, help the families who are living through this daily nightmare. Give us a chance to save those we love.

With desperation and hope,
Gaurav
Son of an ALS Patient