What is the ALS Association?
The ALS Association is a US-based organisation. It attempts to find new cures and treatments for ALS disease. It also works to improve the lives of people who are affected by this disease. ALS is a rare disorder that affects the nerve cells of the brain and spinal cord. It has no cure as of now. The main symptoms of ALS are muscle weakness and paralysis. People suffering from the disease find it hard to swallow, hold things with their hands, move their arms or legs, etc. It mainly affects people between the ages of 40 to 70. Depending on the seriousness of their condition, ALS patients can live for 2 to 10 years after catching the disease.
What was the Ice Bucket Challenge?
The ALS Association started the Ice Bucket Challenge in 2014. It was a social media trend meant to raise awareness about ALS disease.
People poured a bucket of icy-cold water over themselves as a part of the trend. While some people helped spread the word about ALS, some also donated money.
A part of the donations went into funding research for a new medicine called AMX0035. This medicine will not cure ALS but help slow its growth. It will allow ALS patients to live a little longer.
Has India experimented with the idea of public donations to help patients?
The Government of India has recently started the Nikshay Mitra initiative. It is a part of their goal to end Tuberculosis (TB) in India by 2025.
The Nikshay online portal will allow voluntary donors to connect with patients who suffer from TB.
Elected politicians, NGOs, public or private organisations, and individuals can become donors or ‘Mitras’.
What is the importance of voluntary donations?
Treating rare and chronic diseases takes up a lot of time and money. Most people cannot pay for such expensive treatments. They depend on financial help from the government, banks, or other family members.
Such disorders affect very few people, so private companies do not show any interest in making medicines for their cure. Our governments also do not have the money to look after the treatments of so many patients.
Thus, voluntary donations seem to be the best way of helping people who suffer from rare diseases. Taking care of each other is part of what makes us human. Have you ever acted as a donor? If yes, then what kind of donation did you make? Do let us know in the comments.
