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Why did you get involved in the life sciences?
It’s simple, really. For me, getting involved in the life sciences was about wanting to make a meaningful difference in people’s lives. What better industry than life sciences to do that? We see the impact of our hard work right in front of us in the communities we’re trying to serve.
From a pretty young age, my parents instilled in me the belief that I could do anything I wanted to in life – I just needed to want it badly enough. Those two things – genuinely wanting to make a difference, and believing that I could do anything if I worked hard enough – have guided everything that I do.
Unfortunately, each of my parents was diagnosed with a rare disease, and I lost them both far too soon. At that point, I was already involved in the life sciences, and while those experiences didn’t light the fire for me, they absolutely fuelled the flame further. Losing my mom and dad took my passion to a whole other level.
What are some of the key lessons you’ve learned along the way?
First and foremost, I’ve learned to be humble and to never forget that a person’s life or a family’s well-being is in our hands – not just figuratively, but literally. Using this as a back drop is what helps guide me in my decision-making process constantly.
The life sciences ecosystem in Canada is very difficult and complex to navigate. It takes roughly two to three years for a therapy to be approved, reimbursed, and ultimately available to people who need it. With a progressive motor neuron disease like amyotrophic lateral sclerosis (ALS), which is the disease we’re combatting at Amylyx, a person’s average life expectancy is two to five years from diagnosis. People living with ALS don’t have time to wait, so another thing I’ve learned is to be fearless and passionate about people because at the end of the day, this is what the life sciences are all about – people and never, ever taking “no” for an answer.
When I think about humility and determination, I also look inside our company to Amylyx’s founders and co-CEOs Justin Klee and Joshua Cohen, who were doubted early on. Folks thought that their therapy would never work. After all, there had been 80 clinical trial failures for ALS therapies, but nevertheless they kept fighting. If they had accepted “no” and moved on, Amylyx wouldn’t be here today.
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What makes your company unique?
Our founders, who I mentioned earlier, are a big part of what makes Amylyx so unique. Their dedication and determination are definitely driving forces behind the company’s success. They started out with a simple question: why do neurons die? On a podcast that I had listened to prior to joining Amylyx, Justin said that when they were working on their ALS therapy and saw the preliminary results, the therapy went from a hypothesis to a responsibility. In that moment, I knew I wanted to join this organization.
We have an incredible team, too. None of what we're doing would be possible without them. Every single member of our small but mighty Canadian team has a genuine desire to help and possesses such a relentless spirit when doing so.
“I’m passionate about helping the undiagnosed get connected to one of Canada’s ALS centres sooner. As devastating as it is to receive an ALS diagnosis, the sooner we diagnose this disease, the more function people with ALS can retain, for longer.”
Also, the company’s decision to prioritize Canada as its first global launch market is incredibly unique. We’re a small, Boston-based biotech, but Canada was the first country that we filed for regulatory approval in. This meant that our therapy was commercially available in Canada before the U.S. and Europe, or anywhere else for that matter. This is extremely audacious and just doesn’t happen within the Canadian life sciences sector. More and more innovative medicines are skipping Canada altogether because of the uncertainty of the regulatory and reimbursement environment. Amylyx took the bold step to come here first and to manufacture our therapy in Ontario.
Why are you so passionate about serving Canada’s ALS community?
Given that ALS is a diagnosis of exclusion – diagnosis often takes a long time, about 21 months on average in our country – those living with it as well as their loved ones spend half of the disease journey in search of a diagnosis. I’m passionate about helping the undiagnosed get connected to one of Canada’s ALS centres sooner. As devastating as it is to receive an ALS diagnosis, the sooner we diagnose this disease, the more function people with ALS can retain, for longer.
People living with ALS and their families have minimal treatment options. The unmet need is tremendous. It’s not every day that you’re given the opportunity to bring hope to a community and revolutionize the way that a disease – especially one as cruel as ALS – is treated.
When someone is diagnosed with ALS, they say things like, “my world exploded.” I talk to people living with ALS and their families all the time and I hear this again and again. If that doesn't motivate you? Boy oh boy. It’s truly remarkable how tight-knit and tenacious the ALS community is. It’s incredibly special and unique. Above all, it’s those people facing this devastating disease head on who are one of my main sources of motivation.
Is it a hopeful time for Canadians impacted by ALS? Why?
It’s an incredibly hopeful time, absolutely.
No therapy is a cure, but significant strides have been made in the right direction. ALS is now treatable. Available medicines provide hope and give people the opportunity to live for that next milestone – whether it’s a wedding, or a significant other’s birthday party, or a grandchild being born. Thanks to the tireless work of the ALS community, our treatment is available to people nation-wide here in Canada. Our hope is that this will help pave the way for faster access to the next generation of therapies to come.
What we have today is another important step toward making ALS a chronic disease. Our mission is to end the suffering caused by neurodegenerative disorders, and we’re just getting started.
To learn more about Amylyx Pharmaceuticals, Inc., click here.
This story was created by Patient Voice, on behalf of Amylyx Pharmaceuticals, Inc.
