Josh Cohen
Co-Founder & Co-CEO, Amylyx Pharmaceuticals
Justin Klee
Co-Founder & Co-CEO, Amylyx Pharmaceuticals
Chris Aiello
General Manager & Head of Canada, Amylyx Pharmaceuticals
Reflections on progress and urgency from a ‘made in Canada’ biotech focused on progressive neurodegenerative diseases.
Time is the enemy of people living with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease. ALS is a relentlessly progressive neurodegenerative disease caused by motor neuron death in the brain and spinal cord. A diagnosis quickly leads to deteriorating muscle function as the disease takes away a person’s ability to walk, speak, eat, and breathe. ALS is fatal and the most common cause of neurological death in Canada. And despite this disease’s rapid progression (the average life expectancy from symptom onset is two to five years), innovation in ALS has historically been slow and riddled with failures.
That’s kept Amylyx Pharmaceuticals co-founders and co-CEOs, Josh Cohen and Justin Klee, up at night since the company’s early days a little over 10 years ago, when the two were undergrad students poring over neurology papers and following their curiosity about why neurons die. Fast forward to one year ago, when Amylyx received its first drug approval in Canada for the treatment of ALS, before any other country in the world.
“Canada-first” milestones
Amylyx’ ultimate mission is to one day end the suffering caused by neurodegenerative diseases. The company has been making strides to address the unmet needs for people living with ALS. And Canadians have played a key role in the Amylyx story.
“We’ve had strong support from the Canadian ALS community, who fiercely advocate for expedited review of, and access to, treatments for ALS,” said Chris Aiello, General Manager and Head of Canada at Amylyx. One Canadian living with ALS, Norman MacIsaac, initiated a petition with over 25,000 signatures calling for streamlined access to Health Canada-approved ALS treatments. The House of Commons tabled the petition in early 2021, which helped bring Amylyx to Canada.
“For Canadians like me who live with ALS, treatment advancements now and on the horizon offer hope,” said Norman. “Health Canada approval is a first step, but for people who rely on public reimbursement to access treatment, it’s essential to accelerate and streamline the processes governing public coverage decisions so that Canadians who need the medication can access it before it’s too late.”
“The approximately 3,000 Canadians living with ALS and their loved ones are on a different clock, so we continue to work with urgency in our pursuit of creating more moments for this community,” added Justin. Unlike many pharmaceutical companies that manufacture offshore, Amylyx established manufacturing for its medicine at a facility in Ontario, which not only supplies product for Canada, but also the world.
The approval wasn’t the only “Canada-first” milestone for Amylyx, and it won’t be its last. As part of its commitment to helping those living with progressive neurological diseases, Amylyx continues to invest in ways to advance research in Canada.
In partnership with the Canadian Neuromuscular Disease Registry at the University of Calgary, Amylyx established its first global real-world evidence development initiative to gain important insights on its treatment for ALS. Amylyx recently invested in a two-year research agreement with the Sunnybrook Research Institute in Toronto, which will help expedite the identification of future novel drugs to treat neurodegenerative diseases.
“With ALS being the relentless disease that it is, we too have to be relentless in researching therapeutic options that may stop disease progression, as well as continuing to work for equitable access to novel therapies,” Josh explained.
No time to wait
Amylyx’ top priority today is to ensure all eligible Canadians living with ALS can access treatment. The company has been in ongoing negotiations with government decision-makers who they hope will provide timely, equitable access to treatment for those who are eligible, no matter where they live in the country.
With June being ALS Awareness Month in Canada, there’s no better time to shine a light on these important issues.
Learn more at amylyx.ca.
