ALS Ice Bucket Challenge money raised by Maritimers goes to research
Research, power wheelchairs, breathing equipment, client services all priorities, says society president
The president of the ALS Society of New Brunswick and Nova Scotia says the $775,000 raised by Maritimers in last year's ALS Ice Bucket Challenge has been spent on research and client services.
Kim Carter says organizations such as hers are mandated to reserve at least 50 per cent of regional fundraising for national research — so $415,000 was donated to ALS Canada.
Another $100,000 was spent on purchasing new equipment for local patients, such as powered wheelchairs and breathing equipment.
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Carter said the organization will use the remaining $260,000 to pay for a long-term client services manager in New Brunswick — a position the province has never had — as well as equipment maintenance. A client services manager supports ALS patients from the time of their diagnosis to their death.
Carter said she wants her organization to be transparent about who will benefit from last summer's online fundraising campaign.
"Also, to give a little bit more detail about that remaining money to be spent in the future because I don't want it to seem like money is being held back for any reason," she said.
More than 260,000 Canadians participated in the challenge, in which people uploaded videos dumping buckets of ice water on themselves. The campaign was started by Pete Frates and Pat Quinn in the United States.
ALS, or Lou Gehrig's disease, causes the body's muscles to atrophy until death. There is no cure.
Get ready for more ice bucket challenges
Last year, Canadians raised $17 million in funding for ALS Canada. Another $10 million was donated by the Brain Canada Foundation, a non-profit organization.
To continue its fundraising efforts, Carter says ALS Canada will be relaunching the Ice Bucket Challenge in August with similar organizations around the world.
"While $27 million is a ton of money, it's a drop in the bucket when it comes to research," Carter said.
"ALS is a disease that — as we're probably going to find out because researchers are leading us to believe that it has numerous causes, just like cancer does — it's going to have numerous treatments that are going to be required."
Carter said half a million dollars has been spent getting pimozide — an already-approved antipsychotic — into more drug trials because researchers believe it may help delay muscle degeneration.
"We don't want to appear greedy to the general public, but there are still a lot of things that we want to do," she said.
Carter says the challenge won't just be making a one-time comeback. The new campaign, known as Every August Until A Cure, will become an annual drive for ALS funding that starts Aug. 6.