Years after the “ice bucket challenge” raised money and awareness for ALS, a breakthrough drug has been developed.
Clinical trials took place at the Neuro Hospital in Montreal and the results are being called a “breakthrough.”
Paula Trefiak is an amyotrophic lateral sclerosis (ALS or Lou Gherig’s disease) patient who remembers how quickly her three children had to become her caregivers, “watching me become paralyzed to my body, becoming my caregiver and having them lose me as their mother.”
She said that when clinical trials of Qalsody became available, she travelled from Saskatchewan to Montreal.
Dr. Angela Genge said Qlasody is “a groundbreaking therapy, what we call a breakthrough therapy.”
Genge is the lead investigator in the clinical trials. She is also the director of the ALS Centre of Excellence for Research and Patient Care at McGill University.
She said that the medication is different because it modifies the disease itself.
“It took about six to nine months … Some of them improved, some of them went back to normal,” said Genge. “They’re living. They’re not dying. They’re living with the disease.”
Qalsody targets a genetic cause of ALS. Trefiak’s family has the mutation.
“I have seen over two dozen members of my family lose their battle with this disease in my lifetime,” said Trefiak.
After her own genetic test showed the mutation, Trefiak started the monthly injection treatment.
“I’m back running again, which is a true miracle, and so thanks to the early detection and the intervention of Qalsody, I’ve been able to hold on to this reversal, and I am alive today where without this drug I wouldn’t be,” she said.
“We’re encouraging everyone with a family history of this form of ALS to get genetic testing because we now want to see people really early, even before they have any signs and follow them so that we can treat them at the first hint and really reverse the disease like it happened with Paula,” said Genge.
Beaconsfield resident and ALS patient Phil Lalonde has been in the fight for four years.
“It takes away your ability to walk, your ability to feed yourself,” he said. “It takes away totally your independence because you rely on everybody to do everything for you.”
His ALS is not treatable with this new drug, but he feels the ice-bucket challenges helped fund research.
“Because they do research for this part of ALS, they may be finding clues that help us down the road, find a better cure for everybody else,” he said. “So that’s really where it’s hope for all of us, and it gives us purpose to keep fighting and keep going forward.”
He, too, is fundraising by organizing Pointe-Claire soccer tournaments.
“Over the past three years, we have raised over $165,000 for the ALS Society of Quebec to provide services and most importantly, research to find a cure for this brutal disease of ALS,” he said.
