Recently, there has been a surge of social media campaigns to increase awareness of certain diseases, such as the breast cancer “selfie”. A similar undertaking for raising awareness and financial support for research on amyotrophic lateral sclerosis (ALS) was initiated by a small group of professional golfers.

Golfers started the ice-bucket challenge as a way to support their choice of charities. Participants are to dump a bucket of ice water on themselves, tag themselves on social media and challenge others to do the same, or otherwise donate to the charity. The campaign has reached celebrities the highest echelons of celebrity status, from entertainer Justin Timberlake, to Microsoft founder Bill Gates, and even to President Obama.

According to Topsy, a social analytics organization, the Twitter hashtag #icebucketchallenge has been mentioned in more than 118 000 tweets in the past month alone, with more than 32 000 daily tweets this week. The campaign has managed to raise $7.6 million in donations over a two-week period, approximately five times the amount raised during the same period last year. Donors came in the form of existing supporters, as well as 145 918 new contributors, reported a spokesperson for the ALS Association.

“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.”

The campaign gained traction after Facebook’s Mark Zuckerberg took the ice-bucket challenge for ALS. The challenge spread on Facebook in a very “six degrees of separation” manner, starting with golfer Chris Kennedy, who performed the challenge and nominated friends and family, who had overlapping connections with other famous acquaintances, friends or mutual friends, etc.

ALS is a severe neurodegenerative disease classified as a motor neuron disease. Motor neurons are brain cells found in the brain, brain stem and spinal cord, and are responsible for coordinating the control of voluntary muscular movement in the body. In ALS, the motor neurons progressively die, cutting off the communication process between the brain and muscles and leaving the patient paralysed, unable to talk and swallow on their own.

Eventually, due to extended periods of discontinued function, the muscles start to weaken and degenerate (atrophy) to the point of respiratory failure due to collapse of the diaphragm muscle, approximately three to five years after onset. ALS, also referred to as Lou Gehrig’s disease after the baseball player who had it, affects 3.9 out of 100 000 individuals in the United States. Notable individuals continuing to live with the disease include astrophysicist extraordinaire Stephen Hawking.