In September 2022, a giant of the Toronto world music scene was diagnosed with primary progressive multiple sclerosis, and friends and fans are donating money to help him access a costly but promising treatment in Mexico.
Ernie Tollar has performed as part of countless ensembles, including Tasa, Mernie, Maza Meze, Near East, Moneka, and Al Qahwa.
He and his wife, Maryem Tollar, have been something of a power couple in the Canadian jazz and world music scenes, playing all over Toronto and beyond for the last three decades.
Now Maryem has set up a GoFundMe page to help Ernie pay for a Hematapoeitic Stem Cell Transplant.
“The therapies he was offered in Canada were limited and do not have a very good success rate for slowing down the progression,” she wrote on the GoFundMe page.
Ernie has been experiencing symptoms for years, she said. The first signs came after the pair would go on what Maryem would call “epic” walks during the pandemic. Once they got back from the walks, Ernie began feeling numbness in his fingers in feet, had to stretch out his legs, and just felt awful overall.
When they first asked a doctor for help, they believed he had simply pinched a nerve and was on the right track to feeling better.
However, they went to a different doctor who began running diagnostic tests and eventually discovered that Ernie might have something more serious, like MS.
After being bounced around from clinic to hospital, MRI results showed that Ernie had PPMS.
Although his natural charisma and happiness diminished upon hearing the results, Ernie still played music.
“He hasn’t actually stopped playing music. … He does feel tingling and numbness in his fingers. It means he does have to sometimes adjust how he plays but he’s still playing,” said Maryem.
Ernie and Maryem are now asking members of the community to donate to their GoFundMe in order to help them afford the cost of Ernie’s treatment.
Ernie and Maryem discovered the treatment after a long stretch of research.
“Dr. Ruiz Argüelles and Dr. Gómez-Almaguer have performed more than 3,000 HSCT procedures during more than 20 years for hematological and autoimmune diseases, out of which over 900 have been for MS. Their transplant-related mortality is less than 0.26%,” said Maryem.
The couple is hoping to raise $100,000 which would cover the cost of the treatment, and any accessory expenses associated with the trip, and help cover bills as Ernie recovers.
“Of course, we didn’t expect this. The beginning. The fundraising was going a lot faster than it’s quite it’s slowed down quite a bit. But on the very first day we got $20,000,” said Maryem.
The total currently sits at around $70,000.