ALS Canada and its provincial societies are meeting in Toronto this weekend to decide how best to use the $12.8 million windfall raised from this summer’s wildly popular ALS "Ice Bucket Challenge."

The ALS Ice Bucket Challenge raised more than $115 million worldwide, thanks to the campaign going viral and becoming a social media phenomenon.

For the Quebec ALS Society, the ice bucket challenge more than doubled its annual average donations.

Claudine Cook, the executive director of the Quebec ALS Society, said some of those donations will be used for programs including its support group and services. But most likely the ice bucket craze will be a one-off, so services are not expected to change drastically, she said.

“We do have a five-year strategic plan and (the) ice bucket challenge funds will allow us to accelerate this program,” Cook told CTV Montreal.

More than 2,500 Canadians live with ALS, but for many, public services fall short of their needs.

Dr. Angela Genge, Director of Research at the Montreal Neurological Institute, said the average ALS patient receives seven hours a week of home care.

“Seven hours doesn’t cover showering, getting out of bed, getting into bed, moving up and down stairs,” Genge said.

ALS patient Jeff Giles says more assistance is needed for those living with the disorder.

“Where I am right now, I can’t really do much of anything on my own,” Giles told CTV Montreal.

His parents fly out from Vancouver every three months to help, as his wife has a full-time job.

Gilles is provided with about 20 hours a week of home care. Giles says that’s more than most ALS patients receive, but he had to make a case and fight for the extra hours.

“One full hygiene a week –that’s all that they were providing. I actually had to push reasonably hard, and unfortunately I developed a skin condition before they granted me three full hygienes a week,” he said.

Giles hopes the ice bucket donations will mean more care at home for people living with ALS.

Meanwhile, ALS Canada said in a statement on its website that the money netted from the Ice Bucket Challenge will go towards research and helping families across the country.

“Our team is in the midst of organizing a meeting with all of the ALS Provincial Societies across Canada to discuss the allocation of the dollars generously given through the Ice Bucket Challenge," the statement said.

"Although we do not have a breakdown of how much money will be shared amongst the provinces, we can tell you that the funds provided through the Ice Bucket Challenge will help families all across Canada and go towards research."

ALS Canada reports that its annual budget is $7 million. Collectively, with the provincial societies across the country, the annual budgets are $14 million.

Quebec’s Health Minister Gaetan Barrette says services for people living with ALS will most likely remain the same due to provincial budget restraints.

“In some situations, it is difficult having exactly the proper care at home and when you have a disease like that, there will come a point where you will have to move to a long-term care facility,” Barrette said.

According to the Montreal Neurological Institute, only patients expected to die in the next three months are eligible for long-term care.

Amyotropic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disorder that affects nerve cells in the brain and spinal cord and causes muscle deterioration.

There is no cure, but there is a drug available to help slow down the progress once you’ve been diagnosed.

Life expectancy ranges from two to five years after diagnosis. About seven out of every 100,000 people get ALS. In Canada, about 2,500 to 3,000 people live with the disorder.

The ALS Ice Bucket Challenge asked people participating to videotape themselves dumping a pail of ice water over their heads, post the video online and nominate three more people to do the same within 24 hours.

Once a person was nominated, they were asked to either donate to ALS research or participate by dumping a pail of ice water over their head.

With a report from CTV Montreal's Kevin Gallagher