What’s the best way for the ALS Society to use the dramatic increase in donations from this summer's ice bucket challenge?
That’s the question facing the groups from across Canada as they meet in Toronto this weekend to discuss it.
The summer of 2014 brought a waterfall of ALS donations, as the viral campaign swept social media, challenging people to either donate $100 to the cause, or dump a bucket of ice water on their heads. Many did both.
The Quebec ALS Society said the ice bucket challenge more than doubled its annual average donations, and plans to use some of that money for programs like their support groups and services.
Most likely the ice bucket craze will be a one-off, said Executive Director Claudine Cook, so services aren't expected to change drastically.
“We do have a five-year strategic plan, and the ice bucket challenge, the funds are going to help us accelerate that program,” she said.
For the hundreds of Quebecers who live with the debilitating and terminal neurological illness, many say public services still fall short.
At 41, Jeff Giles needs assistance for many everyday activities.
“Where I am right now, I can't really do much of anything on my own,” said Giles, whose parents come from Vancouver every three months to help.
His wife works full time, and the CLSC provides him with 20 hours of care per week.
Giles says he receives more than most, but has had to fight for it.
“One full hygiene a week, that was all they were providing,” said Giles. “I actually had to push reasonable hard, and unfortunately developed a skin condition before they granted me three hygienes a week.”
The average ALS patient receives seven hours per week of home care, said Dr. Angela Genge, director of ALS research at the Montreal Neurological Institute.
“Seven hours doesn't cover showering, getting out of bed, getting into bed, moving up and down stairs,” she said.
Services will most likely stay the same due to budgetary constraints, however, said Health Minister Gaetan Barrette.
“In some situations it is difficult to have exactly the proper care at home, and when you have a disease like that, there will come a point where you're going to have to move to a CHSLD or a long-term care facility,” he said.
According to the Montreal Neurological Institute only patients expected to die in the next three months are eligible for long-term care.
Giles hopes the donation windfall will mean more care, but also knows the ice bucket challenge has made a difference.
“I have to describe less as to exactly what's going on when people ask, so there's more of an awareness,” he said.
