Cherrie-Marie Chiu didn’t truly understand how much the Christopher Chiu Fellowship for ALS Research at the University of Toronto meant to her late brother until nearly a year after his death.
“When Christopher was first diagnosed with ALS (Amyotrophic Lateral Sclerosis), he recorded a whole bunch of his therapy sessions and he told me that once he passed, I should listen to them,” says Cherrie. “It took me a while to get to a place where I could and, about a year after he died, I finally started going through them.
Cherrie and Christopher started ALS Double Play to benefit ALS research at the University of Toronto after Christopher’s diagnosis.
“There was one recording where Christopher says that he doesn’t want his family and friends to stop talking about him and ALS because if we do, nothing will change for the disease. It means a lot to me to be able to fund this research in his name, knowing that it is what he wanted.”
Christopher was diagnosed with ALS in November 2011. An adventurous and active individual, he first noticed he was having trouble playing volleyball with friends. Soon, the 32-year-old could not swing a golf club without loosing his balance.
Cherrie and Christopher started ALS Double Play to benefit ALS research at the University of Toronto after Christopher’s diagnosis.
Christopher sought out his family doctor, who immediately referred him to a neurologist. After a series of tests, he was given the devastating news. Cherrie was the first person Christopher told about the diagnosis.
“We looked up ALS together,” Cherrie remembers. “It was really frightening.”
Commonly known as Lou Gehrig’s Disease, ALS damages motor neurons in the brain and spinal cord, impairing voluntary motor control and causing muscles to waste away. Over time, people living with ALS lose the ability to walk, talk, chew and, eventually, even breathe. There is no cure and few treatments exist.
In Canada, approximately 1,000 people are diagnosed with ALS each year. Eighty per cent die from the disease in the first two to five years after their diagnosis.
Cherrie was the first person Christopher told about his ALS diagnosis.
“Nobody could get us out of this,” says Cherrie. “We just felt so helpless.”
In trying to address this feeling, Cherrie and Christopher chose to take action: founding a charitable foundation to support research into the neurodegenerative disease called ALS Double Play — a nod to Christopher’s love for sports, and baseball’s own connection to Lou Gehrig. Christopher was the organization’s first president.
Among other initiatives, ALS Double Play supports the Christopher Chiu Fellowship for ALS Research at U of T. The fellowship supports early-career researchers (postdoctoral fellows) at the Temerty Faculty of Medicine’s Tanz Centre for Research in Neurodegenerative Diseases.
Cherrie was the first person Christopher told about his ALS diagnosis.
Paul McKeever (PhD 2018) is the most recent Christopher Chiu Fellow for ALS Research. He works with Janice Robertson, Professor and James Hunter Family Chair in ALS Research.
“People like Cherrie and her parents, Alicia and Alex Chiu, really motivate me,” says McKeever. “They cared for Christopher and now care for the community more broadly. They have lost so much to this disease but are still invested in helping.”
People like Cherrie and her parents, Alicia and Alex Chiu, really motivate me. They have lost so much to this disease but are still invested in helping.
McKeever explains ALS is a deeply complex disease, associated with more than 40 genes. Understanding how and why this disease progresses the way it does requires the very latest technology — and even some that doesn’t yet exist.
McKeever and Robertson have taken this challenge on. Together, they are looking at how genes are altered and regulated in different cells, in different layers of the brain and spinal cord, and how this contributes to the progression of ALS.
People like Cherrie and her parents, Alicia and Alex Chiu, really motivate me. They have lost so much to this disease but are still invested in helping.
“There is a widespread dysregulation of the genes, creating an intricate puzzle,” says McKeever. “It’s a complexity that is hard to untangle, because it involves everything in concert.”
Using the vast library of brain and spinal chords donated to the Tanz Centre and the Robertson lab over the years, the team is now applying cutting-edge research techniques to connect the complex web that makes up the biology of ALS.
As McKeever explains, when completed, the dataset will serve as a guidebook with the ability to zoom in and out. Researchers can view the entire landscape of the disease, similar to how one might use Google Maps to zoom in on a specific childhood home or zoom out to see its location in the broader city context.
“I’m glad we’re getting down to this level now because then we can start to think about how novel disease modifying therapies might emerge,” says McKeever.
McKeever also hopes this genetic snapshot of such an aggressive degenerative disease like ALS will have implications for other conditions like frontal temporal dementia and Alzheimer’s.
And, as the researchers work tirelessly on, so does Cherrie, who continues to operate ALS Double Play in Christopher’s honour, talking about her late brother and ALS so neither is left behind.
“It’s about hope,” says Cherrie. “That’s the exciting part of research today — that there are these new findings that can turn into a true treatment one day. And that’s the most amazing thing.”