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Praxis Spinal Cord Institute With Bill Barrable

By July 7th, 2023No Comments28 min read
Home » Praxis Spinal Cord Institute With Bill Barrable

Your brand should represent your capability of being a leader. That means you have to undergo advanced research and provide innovative solutions to people. In this episode, Douglas Nelson sits down for a conversation with the CEO of Praxis Spinal Cord Institute, Bill Barrable. Bill leads a diverse and multidisciplinary team of experts focused on creating solutions for people with spinal cord injuries. Under his collaborative leadership, the Institute has achieved significant recognition. He discusses the most promising ideas from a lab into clinical practice and the marketplace, and ultimately into the lives of people who need them. He also talks about how investment of resources can help you develop the solutions you want to create for people. Tune into this episode to learn more about research, development and making a huge difference in the world.

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Praxis Spinal Cord Institute With Bill Barrable

Our guest on the show is Bill Barrable. Bill Barrable is the CEO of Praxis Spinal Cord Institute based in Vancouver, a not-for-profit organization that drives and advances spinal cord injury research and innovation around the world. Bill, welcome to The Discovery Pod.

Thanks, Doug. It’s a pleasure to be with you.

Bill, the Praxis Spinal Cord Institute I know and many people here in Vancouver know what the institute is, but for those that may not be as familiar, what is the Praxis Spinal Cord Institute?

We’re a nonprofit. We think that we’re fairly unique in the way we conduct our business. We have a vision of a world without paralysis after spinal cord injury. To achieve that vision, our institute takes a full spectrum ideation to implementation approach, which we feel makes us somewhat unique. We move the most promising ideas at a lab into clinical practice and the marketplace and ultimately into the lives of people who need them. Our name Praxis is a Greek word, which means moving knowledge into action, which is precisely what we do. Fortunately for us, because we work not only domestically but internationally, it also translates very nicely into European, romantic languages because of its Greek origin.

Praxis made a bold move to rebrand in 2019. Can you tell us about what led up to that decision?

Praxis is founded on the legacy of Canadian icon and Paralympian Rick Hansen. He was a man with a vision to change the world for people living with spinal cord injury. Many years ago, Rick went around the world as Man in Motion World Tour and raised global awareness of the potential of people with disabilities. The importance of accessibility, inclusivity and the need to find solutions for people living with spinal cord injury. Two organizations came out of that.

One was, out of the world tour, the Rick Hansen Foundation and the Rick Hansen Institute, our precursor name. The foundations focused on accessibility inclusivity for all disabilities across the spectrum. We’re focused solely on advancing STI research and innovation. In 2019, we changed the name to Praxis Spinal Cord Institute because we’re an emerging international focus and the differentiation of the name.

Having an outcome and result means taking action and having a model that runs from the ideation right through the implementation. Click To Tweet

There are dozens, if not hundreds, of Rick Hansen organizations, as these initiatives across the country. We felt that because the word Praxis has a strong history with our institute. We run programs around the notion of moving knowledge into action. It was a good fit for us. We wanted our brand to represent our progression as a global leader, advancing research and innovative solutions for the STI community.

How has that name change been received with your partners both domestically and around the world?

I think, generally, very positively. In some cases, people ask why the name changed. Once we explain the logic behind that, they understand that. Particularly for our international colleagues. It resonates with them because of, again, the Greek origins and the logic behind moving knowledge into action. It helps us to differentiate what we also do with other partners that are working in the spinal cord injury field like the Christopher and Dana Reeve Foundation and the Craig Neilsen Foundation. These are foundations in other parts of the world that are doing complimentary things but are named after individuals that are well known in their communities but not necessarily well-known internationally.

That move to being more international. Something I’d like you to talk a little bit about because when we think about the social profit sector here in Canada and even in the United States, there’s often a focus on whether the market focuses on the country or whether it’s a particular area. You’ve done a lot. You, as the CEO, I know have done a lot of work to build these international partnerships and collaborations. What motivated you to do that? What have been the benefits for the organization?

We have. We work hard at that. The institute began as a domestic program in Vancouver based with what was understood to be one of the most key success factors in moving knowledge into action. That is a registry gathering data around the experience of individuals with spinal cord injury from the point of entry to the rest of their lives. It’s understood that’s an underpinning success factor. That’s a platform, a data platform, data strategy that has helped cancer, for example, advance with clinical trials very successfully in a shorter frame of time. This is what we want to do.

We want to accelerate progress. That began in Vancouver, British Columbia and spread across the country then internationally. One of the reasons for moving internationally and developing this data set internationally was that it allows us to bring smart people, clinicians, researchers not only in Canada but internationally around that data platform and get them working together.

We’re not duplicating what’s being done in other parts of the world and that we’re advancing at a faster pace. One of the other secondary benefits of that, as well as the spinal cord injury, while it has catastrophic personal or human consequences both for the individual and family, but also, it’s a huge economic burden for the individual’s family, the financial burden for their family as well as society at large.

It’s not as common as cancer, for example, and other chronic conditions. To include international sites was a way of us bringing together a larger number of people with spinal cord injury so that when clinical trials are developed, you can do it faster. You need to have comparable study and control groups. In order to do that, you need to be able to choose from a large pool of candidates for that research. That’s one of the reasons why it’s important for us to link arms with other centers around the world that aggregate this data and the patient pool so that we can move that research along faster and a rural patient more quickly in clinical trials that lead to a quicker and more successful outcome.

I’m interested in understanding a little bit more how you play that coordinating role. Being able to use the data as the platform helps identify the questions to be asked, the clinical trials to be run. Are you picking up the phone or getting on Zoom and talking to the leaders in the centers and say, “We need to be doing trials in this area or that area and pulling that together,” or is it a more organic bottom-up approach?

I would characterize it as more of an organic approach. Every center, depending on where they are in the world, has different strengths and different weaknesses. Whether it’s the Miami project, the Craig Neilsen Foundation, Christopher and Dana Reeve Foundation, Wings for Life Foundation in Salzburg, Austria, they all are playing a small role in a larger mosaic of the work that needs to be done to move the field together. The role that we play is that of a convener.

To begin that process, it’s more of an inventory of what’s going on. One of the ways to do that is to have competitions that you open up not only to domestic investigators and researchers and clinicians but also internationally. Invite them to have international partners and participate in those applications so that by virtue of your funding strategy, you can provide incentives for people to work together internationally.

Through that process, we get to know who’s doing what and they get to know a little bit about us and what value we bring to the table. Not only do we bring the funding for some of these projects. We bring a lot of expertise around data analysis. We have a variety of people and within the organization, we add value to the data and who can make sense of it aggregate it, turn it into to acknowledge that wouldn’t otherwise be developed if we didn’t apply those data tools.

One of the things I know is we were getting ready for this interview was something that you’ve talked about it being a different charity, a different social profit. You’ve done a good job of sharing why you’re different. I’m interested when you have conversations with donors and supporters of the organization, what is it that you find most appeals to them about their choice to support Praxis?

It depends on the interests of the donor and their giving history and own personal experiences. Do they have someone in their life with this particular condition? Do they have a family member, a friend? Do they know an end of a story about somebody who’s suffered an injury who like this? That can play a compelling role in their interest in our work. The other is through the model that we have, which is from ideations, as we call it. The conceptualization of the research study and of the commercialized media that involves people with lived experience, people who’ve had a spinal cord injury, so that we don’t go down a rabbit hole with the idea that it will never be implemented because somebody with a spinal injury would never use it.

We want them involved at the very beginning, then to develop a study or the commercial entity and to get it supported or implemented within the healthcare system if that’s where it is or in the community. Completing the research is only one step in the continuum of success. To have a published article in the peer review literature is great, but that’s output. It’s not an outcome. We want to see the outcome. That means a model that runs from the ideation rate through the implementation. I think that’s one of the unique things that we offer. We cover that spectrum.

For various reasons, not all not-for-profits do that for some very good reasons. In our case, we have a spinal cord injury and you have these chronic conditions that come from that. It makes real sense to integrate all of them together so that we’re responsible for seeing not only that the knowledge is developed but that it’s used. The impact is, I think, one of the things that we would put forward at the front end and with a donor. That seems to me to be the thing that is most attractive to them.

The other piece, of course, on the commercialization is that if you have a successful commercial entity. Not only does it provide impact and provide a solution to people with a problem from a secondary complication from spinal cord injury. Also, it offers up the opportunity to provide an income back in the form of equity or dividends or royalties, whatever the case may be, to the institute to support its mission further so it can continue to do its work.

Be responsible in not only ensuring that knowledge is developed, but that it's actually used. Click To Tweet

I would imagine that idea that you’re so deeply connected to those individuals, those lived experiences and translating that to solutions for those individuals. It’s probably very appealing to donors. You’re working internationally, and when you talk about datasets, which can be abstract for funders and donors to say, “I want to help fund a dataset.” Being able to connect that directly to the experience of those with that lived experience of a spinal cord injury is probably very powerful. They know the challenges. You don’t need to educate them on the challenges, the people at spinal cord injury. You’re offering them a pathway to a solution.

I think impact is the key piece to this is. We’re not offering only research. We’re offering a value proposition that includes the research output, but also the implementation, the outcome from the implementation of that, whether it’s in the commercial realm, the community or within the healthcare system.

Bill, you’ve been a voice, a leading voice for a number of years on the concept of the valley of death that lies between discovery and commercialization. Maybe you could start by describing what that valley of death is and how Praxis works to close that gap.

That’s a common term in the lexicon of venture capitalists and angel investors and the startup community. It’s one that we’ve adopted into our own world. There are two of them. There’s from bench to bedside, as we call it. That is between the fundamental foundational research that might occur in a laboratory and then the findings that you might test in the clinical world do with human beings with clinical trials. That’s a very difficult chasm to the bridge because there are a lot of things that you need to know and understand the ways in which you need to adopt that, those findings so that you can create a clinical trial that has a chance of success. That would be essentially the first valley of death. There’s a lot of things that can go wrong.

You need a lot of funding for that. Clinical trials are very expensive. You have to go to ethics approval at the various universities, get regulatory approval, etc. There’s a lot of work that needs to be done that’s behind the scenes that people wouldn’t ordinarily understand unless they were directly involved in that work. The second valley of death is from the bedside to worldwide. It’s scaling the work that’s been done after a concept has been proven. It’s pre-prototype and post-prototype before the concept is proven and afterward.

After it’s been proven, you have the sometimes very difficult job of making it commercially viable and going through all the regulatory approvals and getting reimbursement approvals that are necessary to make that proven idea available to people who need it. That can be as difficult and sometimes more difficult than doing the fundamental research in the first place. It’s not good enough that you have a great idea, but you’ve got to be able to manage it well and resource it. You’ve got to get the funding and all the various approvals that are necessary and do the marketing and everything else that’s necessary. It’s a very difficult job to do when you’re doing it for the first time.

You have a unique perspective, particularly on that bedside to the worldwide section of the valley of death. If there’s one thing that you could change about how discoveries or devices move from proof of concept to that worldwide adaptability, what most needs to change, or where would you start?

In Canada, for example. Canadians are very good at starting companies with a lot fewer resources than maybe people in other countries, particularly in the United States. We’ve had to bootstrap things. Capital is more freely available in the United States. Freely maybe isn’t the right word, but maybe more readily available for investment than it is in Canada. It’s almost like the law of large numbers. I think one of the things that would make that easier on the commercial side in Canada is to have more investment provided to earlier-stage companies. Not only for the research. We do tremendous research in Canada. We have some of the best neuroscientists in the world.

We have a top-notch data platform in the world. That comes from other people who are involved in our field. Not from us per se. There is a tremendous opportunity for us to accelerate that along with greater investment in the area as well on the business side. There’s a tendency for Canadian companies to get sold in an earlier stage to larger entities from elsewhere. If we could fund them here longer and develop more value, then maybe someone could also stay at home.

Funding certainly would be a key one to improving the challenge of the valleys of death. A secondary one, and I think one that is going to be emerging with the development of artificial intelligence, is that we have an AI lab ourselves. Machine learning is something that is applied to a lot of things, but it does have the potential to improve and shorten the period of time that clinical trials are necessarily done.

Clinical trials are very expensive. If we can shorten that with better data and better analysis of data and understanding of what’s happening with the patient, then we can reduce that runway that’s required to complete a trial and get something to market. Now between the time of fundamental research and pharma and a drug being available to the public, the average period of time is seventeen years, which is way too long. If you’ve got a condition like spinal cord injury and there’s research and knowledge that’s available that can help you, but you have to wait for all these steps to be observed in that process. We want to shorten the length of time that it takes to get things to market.

What you’re describing is pretty high-level complex work. I want to shift a little bit and ask you a couple of questions about the board that runs the organization. As an organization, I know you personally have done a lot of work to make or have the board reflect the international nature of the work that you support. Probably more than most organizations in our sector. You are ready for more virtual governance when the pandemic hits in March of 2020. How do you keep your board members engaged at this level of complex work when they are scattered around the world?

I think you alluded to it a little bit in the sense that we have had a little bit of experience with that already because our board membership comes from not only across Canada. It’s not only Pan-Canadian, but we also have international members that reflect the nature of our vision and our mission and the work that we do with various partners around the world. We have registered sites in China, Australia, New Zealand, Israel and the Bay Area, in addition to the 31 sites across Canada.

It’s inherent and it’s an obligation of ours to include people with governance experience who can help us in our journey from other parts of the world. As a consequence of that structure, even before the pandemic, we would have the majority of our board meetings virtually and we have to accommodate five different time zones as, as a result of that. Balancing Israel and Australia is a bit of a challenge because of the time differences there. Somebody is up in the middle of the night, but we have a very committed group.

The board represents not only outstanding performance in their own respective fields and areas that can be a benefit to the institute. They also have one of the things I think that binds everyone together is a common set of values. They’re all very collaborative. They have a values sense that is commensurate with the mission. There are lots of smart people around the world who have been very successful, but it’s important for our institute to be collaborative because of the nature of the work that we do internationally. They have to believe in inclusivity because that is the foundational value upon which we are founded. That’s why we exist.

We believe that people with these injuries should have an opportunity to return to a fully active life and to be included in society and continue to work if they wish to do that. That’s why we exist and they’ve been extremely supportive. One of the ways to maintain that engagement is through our committee structure, like the commercialization committee and the fund development committee, for example. A number of them come with expertise that is germane to our work in commercialization and fund development.

There are no trust hacks to building international trust overnight. Click To Tweet

When we launched the ideation program and our incubator program for companies, the accelerator programs, a number of our board members already had experience in doing those things and working with early-stage companies. We were able to engage them early on in that advice because it was new to us. It’s new to charities to be doing these things. There wasn’t any pre-existing model that we could look to in Canada that showed us the roadmap of how to do this. We had to start from scratch. Fortunately, our board members had the expertise and experience that they could help us so that we didn’t make the big mistake and get off on the wrong foot, so to speak.

As the leader of the organization, how do you leverage that expertise of your board? Not only as a full group. I imagine you have one-on-one conversations with board members on a fairly regular basis. How do you use your board to help you lead the organization?

In a number of different ways, for example, we have relationships now with various bio-engineering programs around the world, the India Institute of Technology, Hebrew University, Bauhaus School of Biodesign, Indian Spinal Injuries Centre, Georgia Tech University. A number of them are in the US and China and, of course, across Canada. Some of our board members have an academic affiliation. Some of them are involved directly with these universities.

One of our board members, who is a quadriplegic, was on the board of Georgia Tech and a Chair of the Health Insurance Fund for Georgia. He’s been able to introduce us to people that we would never have met both in the scientific world and the commercial world and in the venture capital world because of his connections also, provided leadership to the development of our commercial program.

We have an anti-technology expert with a legal background who worked for a pharmaceutical company that set up a technology transfer program at Hebrew University, who’s on our board. She’s an incredible dynamo who’s been able to, again, introduce us to key figures, including the Israel Innovation Authority and other key groups in Israel. They’re world-renowned for their ability to innovate and get that innovation to market. Israel has a phenomenal record on Nasdaq for getting companies up going.

We have clinicians on the board. We have people with spinal cord injury on the board who happened to have spinal cord injury on the board. Our board chair has had an injury. He’s an emergency doctor in a Canadian teaching center and head of the training program there. The vice-chair is the new CEO of the engineering arm of SNC-Lavalin. They bring their engineering background, their own lived experience, their ability to help us navigate in areas that we don’t have a core competency, like the commercial world where we’re building that core competency now, but it’s not our core competency. Our core competency is data, data analysis and the ability to move things along to bridge those valleys of death.

Each of them brings something different. We have Paralympians on the board who have a tremendous commitment to exercise. It’s understood that exercise rehabilitation is one of the things that can help someone post-injury, that is well-known and we need to provide further education to people who are newly injured on what kind of exercise to be doing so that they can enhance their recovery.

I want to connect what you said earlier about engaging the board about being so clear about the values that unite the organization and drive the organization. We know the biggest challenge for most social profit organizations is how do you get your board members to bring their best selves, to bring their best advice? Whether it’s the professional, their lived experience or a combination of both. That’s the challenge.

Many CEOs in this sector manage year over year. You started with, “We’re all connected by the same value.” I think that’s so true. The most successful organizations in our sectors are it starts with everyone understands the organizational purpose. The board knows what we’re here to do. The management’s aligned to help accomplish that or to accomplish that. It forces everyone to up their game.

It sounds like you’ve done a lot to do that. I’m curious, as you’ve been the architect of this collaborative engine around spinal cord injury and the world. That idea of collaboration is powerful. It’s almost a meme in the sector now is people are looking to emerge from this pandemic. What advice would you have to other organizations or other CEOs who are seeking to build, whether it’s a local, national or international collaboration? How do they get started and what keeps it growing?

There’s not an easy answer to it. There’s a lot of things that have to go into play, but philosophically, if you want collaboration, you’ve got to bring people together and you have to build trust. They have to understand that I think that what you’re trying to own is ultimately you want to own this collaboration in a multifaceted way together. That’s not an easy thing to do overnight. It takes time and it takes investment. It takes investment and resources. In the early stages of the Institute, we invested in projects and people around the world with no immediate expectation of a return, but that we wanted them to be successful.

We tried to communicate, “Your success and your endeavors that’s our success, too.” I think that it takes time for them to get to know you. It takes time to build trust. We’ve got people doing very complimentary things around the world and giving credit for success is important. One of our board members is a real proponent, both in what he says and what he does of servant leadership. I would like to think that this is something that I’ve adopted as well, for others to judge that. It’s something certainly as an aspiration that I feel has tremendous value, both on an individual level and an organizational level.

As a charity, our board members, our staff, we don’t legally, in any fiduciary sense, own anything. We are stewards of a mission. We own a set of aspirations together with others that we’re trying to achieve together. The sense of ownership, I think, when you’re trying to achieve a collective goal, takes on a number of different dimensions. The notion of servant leadership, where we’re here to try and help others to achieve their potential, is with a philosophy that is important to start with. If you’re working internationally where the cultures, the languages, the values can be quite different, if they can’t see value in what they’re doing and they feel that you value their work, you’re not going to get very far.

There are no trust hacks to build international trust overnight?

I’m turning on the news and I don’t see them.

I like what you’re saying. I want to underline that for our audience, that idea as the staff leaders, we are stewards of the mission. We don’t own anything. I love what you said. We own a series of aspirations that are shared with all of our partners. That’s a great summation of that work of keeping the purpose of the organization at the forefront of people’s thinking and their actions. That creates that alignment and engagement that so many organizations are looking to build.

As we’re coming to the end of our conversation, I want to ask you. Having had the chance to work with you a number of years ago and I had the experience of, “What is Bill doing? He’s having a conversation in India. He’s talking to somebody in New Zealand and someone in San Francisco.” You were planting seeds all over the world and now it’s great to see how that’s grown into such a fruitful organization and series of collaborations. Who do you look to when you have a question that you’re struggling with as a leader?

Personally, I’m sure I’m following people unconsciously without realizing that I’m observing them. I often say this to people who are looking for mentors, sometimes younger people particularly. My advice to them is, “You may want to have a conversation with our personnel. Ask them if they’re willing to be a mentor for you or you may decide that their mentor and they may never know that they’re a mentor for you, but you’re observing what they’re doing and you’re watching how they adapt to situations.” I would say I had a number of mentors in my career. Some of whom never knew they were a mentor. We never discussed it openly, certainly.

I’m sure on some level, they understood that I would be virtue of maintaining a conversation with them over a period of years. One of my mentors was Dr. David Hardwick, who passed away. He’s somebody I appreciated and enjoyed his approach to things. He was particularly good at where there was conflict involved and bringing things back to first principles. It’s situational and it would depend on the problem.

People with spinal cord injuries should have an opportunity to return to a fully active life and to be included in society and continue to work. Click To Tweet

I would take my most intractable problems to him. It doesn’t mean they’re going to have the answer, but they help you develop a process to get to a resolution that works. He was about making things work. I don’t have an easy answer for you on that other than I like to read around. By that, I like to read alternative points of view. I don’t want to get stuck in a corner. I love reading The Economist, but I also like reading things that are across the political spectrum.

Some of which I don’t particularly agree with, but it gives me a sense of the perceptions of others. I read The Economist because we work internationally and it’s very much an international journal and it has its own perspective, of course. I do think it’s important to challenge one’s point of view. Otherwise, we become a bit calcified and we stop questioning ourselves. When you stop doing that, then your humility goes. When that goes, then you’re not able to achieve what, ultimately, you’re relating to underlying the work that we do because we work internationally. We have to come with a sense of humility because there are others around the world that are doing things as well as we are or better. We’ll all be better off if we’re able to see that.

That’s brilliant, that idea of needing to understand that the spectrum of ideas and issues at play rather than having the one hammer that you have and swinging it as fast as you can. As the final question, it could be the question that was the whole interview or the whole conversation. With all the good work that Praxis is leading, what’s left to be done? What are you most excited about?

I’m excited about this great work that’s been done. There’s so much tremendous research that’s been done already, Doug. The heartbreaking thing is a lot of it doesn’t get used. We’ve got tremendous research in this country, as good as anywhere in the world. Oftentimes, it stops there and it doesn’t get translated. It doesn’t get implemented. There’s a lot of stuff already there, out there. Companies that are working on things that could be applied to solving our problems.

It’s one of the things I tell people is part of my job is to talk to a wide range of people from not only Canada, around the world but problem solvers and tell them what our problems are. We provide the problems. They provide the solutions. Together we’re a whole. We love the bioengineering programs because these are folks that are being trained to solve problems through technology or processes. Also, the universities have pharmaceutical programs, stem cell programs that we know have the potential to solve these amazing and these complicated problems.

Paralysis is one of the most, if not the most, complicated, complex, difficult problems to solve in medicine nowadays. We have the capability to do that, but if we want to speed that process up, we have to work at it together. Not only domestically but internationally. It gets me excited that we’re adopting these success factors to move things around, move things a lot more quickly. Hopefully, in the process of being successful and moving it faster with our partners, it won’t be something we own solely. It will be something that there are field loans. We can catch up to the success that we see in the cancer field with the tremendous success that they’ve had in doing clinical trials and curing cancers that generation two ago were incurable.

This provides great excitement to us that we’re on the right track and the success and impact are coming even more quickly. There are technologies now like exoskeletons. They are going to allow people to walk in ways and move in ways. Not only for people with spinal cord injury but people with other disabilities, the elderly and in the industrial setting, that’s going to be transformative. These are the things and they’ll come around the corner through artificial intelligence, machine learning in unanticipated ways. It will be very exciting.

I love your energy for it and having watched you and your team have built the organization over the last number of years, it’s impressive to see where you are. I’m excited to see where you’re able to take it in the months and years to come. Thanks for sharing that with us on the Discovery Pod.

Thanks, Doug. My pleasure.

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About Bill Barrable

As CEO of Praxis Spinal Cord Institute, Bill Barrable leads a diverse and multi-disciplinary team of experts focused on creating solutions for people with spinal cord injuries. Under his collaborative leadership, the Institute has achieved significant recognition as an outstanding charity, including accreditation through Imagine Canada’s rigorous standards of excellence, and is ranked as MoneySense and MacLean’s top-rated charity in Canada for 2019.

Prior to the Institute, Bill was Chief Executive of BC Transplant during which time it was honored with the Canada Award for Excellence from the National Quality Institute. He led the creation of the first online digital signature organ donor registry and also championed the passage of legislation that enshrined the rights of organ donors into the Human Tissue & Gift Act of BC.

He has been a member of numerous governing boards of various kinds and holds a BA from Queen’s University, and a Master of Health Science from the University of Toronto. In 2010, he received the alumni leadership award from the University of Toronto’s Society of Graduates in Health Policy, Management, and Evaluation. He was previously named one of Canada’s Top 40 under 40.