In recent weeks anyone who has been on social media sites such as Twitter and Facebook has seen numerous videos of people pouring icy cold water over the heads.
What began as a small campaign in the United States several weeks ago has gone viral, raising huge amounts of money for ALS (or Lou Gehrig’s Disease) – a progressive neuromuscular disease in which nerve cells die leaving voluntary muscles paralyzed.
For the ALS Society of Nova Scotia, more than $40,000 has been raised in just 10 days by people accepting the challenge.
“It has been an unexpected gift for us, that’s for sure,” society president and chief executive officer Kim Carter said. “It was a very organic campaign. It started in the United States with Pete Frates, who is 29 and was diagnosed with ALS. He had received some help from his local ALS association and challenged his family and friends to dump a bucket of water over their heads or donate $100 to the ALS society.”
Through social media, the campaign went viral and people of all ages have been participating from athletes, to politicians, to business leaders and ordinary men, women and children.
“It’s one of those things that caught the imagination of the public and went viral about 10 days ago,” Carter said. “We’ve had to scramble to catch up ever since.”
Carter said the way the campaign works is once someone is challenged he or she has 24 hours to pour a bucket of ice water. If the challenge is not met a donation is to be made to ALS. Carter said people are paying even if they accept the challenge and get doused in water.
“Many people are doing the challenge and donating as well,” she said. “From elementary to high school and adults, everyone is doing it. It has caught the imagine of many people and helped us tell what ALS is because not many know what ALS is.”
Carter said the money that’s being raised is being used for research and client care across Canada. Client care includes equipment. During the disease, she said, most patients use $70,000 worth of equipment and that it’s cost prohibitive for most people.
“We loan that equipment out free of charge and help people navigate through the health-care system. We help them with information and support and we’re mostly just a shoulder to lean on when times get tough,” she said.
At any given time, between 65 and 85 people in Nova Scotia are battling ALS, for which there is no cure.
“It’s always fatal with the average lifespan after diagnosis being two to five years. They lose their ability walk and talk and eventually they lose their ability to breathe on their own,” Carter said. “Because of this they can’t work and in many cases their spouse has to stay home and look after them. It has a huge impact on their family.”
She said the effort has not gone unnoticed by ALS patients and their families. Carter said the challenge has given them a new sense of hope that we may see an end to this in the not too distant future.
“ALS spends more money per patient than any other disease group in the country,” she said. “We have the biggest amount of research money spent per person than any other disease. We really believe we’re going to beat this disease within our lifetime.”