Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. It is a rapidly progressive and fatal neurological disease characterized by the gradual degeneration and death of motor neurons.
According to BCC Research reports, between one and two cases per 100,000 population appear every year; the disease commonly strikes people between 40 and 60 years of age, and men are slightly more prone to it than women. It has been estimated that there are 30,000 to 40,000 cases of ALS in the U.S. at any one time, and at least 200,000 in the developed world. Clearly, the global prevalence is much higher.
The renowned author of the famous book, A Brief History of Time, Stephen Hawking, is a living example of the motor neuron disease. Hawking, who was diagnosed with the Lou Gehrig’s disease at the early age of 21, has been living his life for the past 70 years through a speech generating device.
However, in the context of this little known disease, it is undeniably hard to miss the ‘ALS Ice Bucket Challenge’ videos going viral on social media all over the U.S. and consequently spreading across India and other parts of the world. The so-called ice-bucket challenge—dump ice water on yourself, post and tag yourself on social media and challenge others to do the same—got its start among golfers as a way to support pet charities. In just a few weeks, it has become a major fundraising coup for patients and organizations with ALS.
Prior to the challenge, public awareness of the disease was relatively limited. The ALS Association state that prior to the challenge going viral, only half of Americans had heard of the disease, often referred to as “Lou Gehrig’s disease”, after the famous baseball player Lou Gehrig, who publicly revealed his diagnosis in 1939.
“It’s very difficult to fundraise because most people have never heard of ALS and it’s a very complex disease to discuss and explain,” said Lance Slaughter, head of fundraising for the ALS Association. “We don’t have survivors of this disease.”
After the Ice Bucket Challenge went viral on social media, public awareness and charitable donations to ALS charities soared. The New York Times reported that the ALS Association had received $41.8 million in donations from July 29 until August 21, 2014. More than 739,000 new donors have given money to the association, which is more than double the $19.4 million in total contributions the association received during the year that ended January 31, 2013. Similarly, the ALS Therapy Development Institute reported a ten-fold increase in donations relative to the same period in 2014, with over 2,000 donations made in a single day on August 20, 2014, while Project ALS reported a 50-fold increase.
The viral challenge reached India and the Indian film industry fraternity has come forward graciously to do their part and participate in the challenge. Akshay Kumar, Amitabh Bacchan, Abhishek Bacchan, Siddharth Malhotra, Bipasha Basu, and Sonakshi Sinha are a few of the early participants.
Some of the other popular celebrities to take up the challenge in the U.S. are Bill Gates, Charlie Sheen, Lady Gaga, Justin Timberlake, Jennifer Lopez, Tom Hanks, Reese Witherspoon, Jennifer Aniston, Leonardo DiCaprio, David Beckham, Robert Pattison, Britney Spears, Hugh Jackman, Tom Cruise, Kate Moss, Giselle Bundchen, Selena Gomez—the number is growing every day.
The National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health, is the Federal Government’s leading supporter of biomedical research on ALS. The goals of this research are to find the cause or causes of ALS, understand the mechanisms involved in the progression of the disease, and develop effective treatments.
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