Amyotrophic lateral sclerosis (ALS) has been getting a worldwide recognition since the ‘ALS Ice Bucket Challenge’ went viral on social media last month. Here are some facts on ALS, ‘the Ice Bucket Challenge’ and authors who have lent their support.
What is Amyotrophic lateral sclerosis (ALS)?
- The disease is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralysed (source from ALS Association).
- It is also known as “Lou Gehrig’s Disease.
- In the UK and Australia, the disease is categorised under Motor neurone disease (MND).
- The most well-known individual with ALS is perhaps Stephen Hawking, a British physicist.
- It is unclear what is the exact number of ALS patients in Malaysia. In developed countries, there is on average one ALS patient for every 500,000 persons, thus there might be about 60 ALS patients in Malaysia today (source from The Star Malaysia)
What is the ALS Ice Bucket Challenge?
- The aim of the challenge is to raise awareness of ALS
- An individual who has been challenged must either (a) dump ice water on him-/her-self within 24 hours of accepting the challenge, or (b) donate to a local ALS organisation. Some people do both!
- Individuals who complete option (a) could nominate 3 people to take up the challenge.
- Many famous figures have done this challenge from technology whiz (e.g. Bill Gates, Mark Zuckerberg) and business moguls (e.g. Donald Trump) to actors (e.g. Robert Downey Jr., Tom Hiddleston, Benedict Cumberbatch) and athletes (e.g. Lewis Hamilton, Usain Bolt, Dato’ Lee Chong Wei).
- Stephen Hawking was involved in the challenge too. Click here for the story.
- The challenge became viral because of our need for social validation. Since it is for a good cause and almost everyone is doing it, we feel obliged to be involved either by posting videos, completing the challenge and/or donating to ALS/MND organisation. To read more about the psychology of the ice bucket challenge, visit these link: The Age and/or Bloomberg Business Week.
What about literary world? Are there any authors who have taken up the challenge and/or have donated?
Neil Gaiman – He was challenged by his wife, Amanda Palmer whose step brother died of ALS. I like that he mentioned how the challenge works.
Sandra Boynton – She’s been a supporter of the cause ever since her sister died of the disease 10 years ago. Ms Boynton took a unique approach to the ice bucket challenge.
Stephen King – He did in honour of a friend who suffers from ALS.
Simone Elkeles – author of ‘Perfect Chemistry’ series.
John W. Quinn – author of ‘Someone Like Me: An Unlikely Story of Challenge and Triumph Over Cerebral Palsy’.
How can you help the cause?
The Ice Bucket Challenge seems like a fun thing to do. However in my humble opinion it does not do much for the illness other than telling people of its existence. Instead of pouring ice water over yourself, why don’t you donate some money to your local ASL or MND organisation? Here are some links to the organisations:
United States of America – ALS Association
England, Wales and Northern Ireland – Motor Neurone Disease Association
Australia – Motor Neurone Disease Australia
Malaysia does not have an official ASL organisation but you could contribute your time, money and/or resources to Malaysian Rare Disorders Society (MRDS). MRDS is a volunteer-run organisation that takes care of the welfare of individuals with rare disorders and their families. Visit this link to find out more information about the society.