President Michael J. Strong’s opening remarks – SPOR Summit 2018

  • Transcript

    Dr. Strong: Well, thank you very, very much for the invitation to join you at this. It's been a wonderful event. I was here last evening, I got a chance to see, in fact, every single poster; I think I visited every single – every one of the booths. I made sure I hid my tag so I didn't get asked too many questions about CIHR…

    I thought what I might do is spend a few minutes, first off, welcoming all of you. It's not lost on me that this is a partnership, and I do get asked, not infrequently, what's my biggest surprise since coming into this role as President for CIHR? And there are a few of them – okay, there's a lot of them, but I would say that on the top of that list would be SPOR, without a doubt, and I'm going to explain to you why in a moment. Part of it is to tell you a little bit about what I would consider to be my lived experience coming through this – as an investigator, as a clinician scientist – and then how that has changed a great deal. And then I want to close by challenging you a little bit – okay, I'm going to challenge you a lot as you move forward with this, because it's something that we need to be thinking about (and I'll come back to that in a moment).

    So, for those of you who don't know me (and the vast majority of you would not), I am a clinician scientist, I'm a neurologist by training. My area of research and work has been in Lou Gehrig's disease, so motor neuron diseases, and I've really had two parts of my clinical hat – one is really to be working on issues of what we call cognition and dementia that can occur in motor neuron diseases, a largely unheard-of condition. The other hat has been very fundamental cellular biology, working at the level – the molecular level – of understanding the disease pathogenesis.

    Let me take you through a little bit of the journey there, because it's one that is not uncommon in Canada, and it's one that is a challenge for you to deal with as a group. When I first came back to Canada, it was in the 1990s, and I came back to London specifically because of the nature of the clinic and the research that we could do there, and my patient population was purely looking at ALS individuals, individuals with a motor neuron disorder. The families were coming in and saying, "Our loved ones' behaviour has changed. Their consistency in decision-making has changed. They're more cheerful, but sometimes they break out in inappropriate laughter." And the teaching had been that, well, what do you expect? You know, that was all part-and-parcel of a disastrous diagnosis, so everybody's going to handle it a little differently going forward with all of that. But, that emotional ability component could actually be devastating, so when you talk to patients and their families, they wouldn't go out. They wouldn't go to dinner, they wouldn't go to church. They didn't go to social functions, they didn't want family to come over – because they didn't know if they might break into tears and couldn't control it. They might start laughing and couldn't control it. And we tried everything we could from a pharmacological point of view to see if we could get it to stop. I had no success whatsoever.

    But then one evening, I was at dinner at a colleague's house, a neuropsychiatrist in London, we were sitting down (and yes, at that point in time we did have a scotch in our hands) and I said "You know, Peter, let me ask you: I have this problem that I can't solve. What do you think?" In a heartbeat, he said, "Well, why don't you try these two drugs in combination for it?" So I did – and I never saw that symptom complex again. [The drug combination] stopped it dead in its tracks. However, we looked at that and thought, "That makes no sense, none whatsoever, because where the drugs worked, their target receptors were not in the region of the brain that we would've expected to see motor neuron degeneration." In fact, they were in areas in front of the motor region, completely derived differently, so it shouldn't have worked – unless there was something else going on in the disease process. And then the pennies started to drop as patients and their families would come in and say "You know, we have to show you this." I still remember one of my best patients: this chap who was mainly about this tall [gestures], a truck driver, and he was one of the roughest people who had ever come in for it. He was the only person in 20-something, 30-something years of practice who would consistently call me 'Mikey'. Right, I was late into the clinic and I could hear this "Mikey, where the hell are you?" "I'm seeing someone else, I'll be right there!" "No, I want to see you now!"

    Anyways, long story short, one day he brought in poetry…he had started writing poetry. The last person on the face of the earth that you'd think would start bringing in poetry… And other patients would come in and their families would bring art pieces. They're in my office, they're all over the walls! And then the pennies started to drop that there was a region in the brain that was involved - and my patients were telling me this through their symptoms, their disease, through their families. To make a very long story short, there are now criteria called the Strong criteria; these are international criteria by which we diagnose frontal temporal dysfunction (so, frontal regions of the brain). Sixty percent of patients get it, and if you get it, your survival in what is already a horrendous disease is one year less. And yet we know the basis of it now, we were able to take it to the lab, to do the molecular work, we now understand,  I can now reproduce it in animal models, I can reproduce it in cell culture, I can stop it on a dime with four different drugs, or a molecular manipulation… And we're going to go back to 20 years later, to the individuals who started us on that journey, and say, "We're ready now to go and see if we can treat it."

    I've done patient-[oriented] research throughout my career. So why is it, then, less than eight months ago - when I was sitting down to a dinner with colleagues while wearing my hat as a fundamental cell biologist doing RNA work, happy to have all my grad students working away on finding molecular things – we're sitting down, and an individual says to me, "Who's going to be the next president of CIHR?" and I'm thinking, "Well, I don't know!" (Right, okay, so I can lie every now and then.) And then the question around the table is, "What would you do with SPOR if you were the president?" And what I said was, at that time, "Well, if it were me, I would do the same thing if I got spores into my incubators – I'd get rid of them and start all over again." That was eight months ago, right. I was not facetious.

    And now here I am, eight months later, and you're not going to find a stronger supporter of SPOR amongst you. So why? What changed in eight months that started off from someone – and I was doing patient-[oriented] research, it was the core of what I was doing – [when I was] saying, "This should've been destroyed,", and now I'm saying "Are you kidding?" What's the difference?

    The difference is huge, right? And it's knowledge. And there's my challenge to you – what I now know about SPOR is light-years beyond what I knew six months ago. I know about where it's come from, I see the interaction, I see patients becoming engaged, I see the data on diabetes reduction within First Nations populations by having teenagers teach younger children how to change their activity levels, their diet, how to look at the metabolic risk factors coming forward with patients becoming engaged. I see the questions that are being asked now, because they're appropriate to patient populations who need to have those answers in place, and I see the tools that are in place that are starting to answer those questions. And so if somebody came to me and wanted into my lab and I had an experiment – I used this example last week - and my centrifuge is running away and they go over and they unplug it. So you're done – halfway through the experiment. What do you think my response is likely to be, or the response of my graduate students? Let's just say not pleasant

    So tell me again why someone would come along and pull the plug on SPOR halfway through the project when you're just really getting rolling. When the organizations are just starting to bring the data to the table, when you look at this [gestures], the largest grouping that you've had thus far. And I did look at every poster last night, you're asking all the right questions. So, here's the challenge for you – how do you take people like me (and we're out there, there's a lot of us), generally we're called Pillar One, the other end of the spectrum of science research, fundamental cellular biology, where our understanding was that this program was created at the expense of all other research that was being done. It wasn't! It was a brilliant stroke! It's a brilliant partnership. So you've got to get that message out there. You've got to get that message out there, not just to patient populations to get them more and more engaged, to our partners (federal, provincial, health-care organizations, NGOs, Research Canada - you name it, go down the list) – they have to understand what this is achieving. Every one of you in this room, I don't care what your job is in the rest of your day, you are now a spokesperson for SPOR. You have to get out there, and every opportunity say "This is what's out there, this is what's happening, this is the [added value] to having done this." Because it's there, it's crystal clear when I look.

    So you will never hear me say I'm going to get rid of SPORS- (laughs) SPOR… okay? What you're going to hear me say is, "Let's get ready for four to five years from now." We're going through a transition right now, and SPOR too. It's going to look like something different, and it was supposed to. The design was "stability in certain areas, build up other ones". So that's going to happen, you're doing fine on all of that. I'm not worried about that. What I'm worried about is your big challenge; your big challenge is [that], four years [or] five years from now, you need people like me (assuming [CIHR] has not gotten rid of me) going forward to the governments and saying "This has been so valuable to us, and here's the evidence for it." The storytelling is critical. Make them clear, make them concise, show us how they're actually changing the care of patients and their participation and the data on how [SPOR] is changing health outcomes. That's what we do, that's what CIHR's mandate is. Show us the data, make it crystal clear. Make it so that anyone can look and go, "I can see this easily." And show us the relevance to changes in health care outcomes – not just for a few years from now, but twenty years from now or twenty-five years from now. We all know – when I look around this room, I can say I have as much grey hair as some other people in here – that we're not getting younger as a society. Our cost is going up, our disease burden is going up, and we cannot afford this. SPOR has to help solve that.

    So I want – and this is self-serving – in four-and-a-half years' time, when we're taking this argument forward, [for us to be] so crisp in why this is an important strategy nationally AND internationally that it's undeniable that it should grow and become bigger. Not simply [survival], I want to see [growth]. So there is your challenge, that is the one I am missioning to all of you. Go forward, continue doing what you're doing right now - but get it out there, make sure everybody understands it, build it, and give those of us who need to argue for its continued existence (in a greater format, in a few years' time) everything that we need to do that. And if you do that, I will make this covenant with you. I will be the first one to the front of that list, going forward, to argue on your behalf. That's a guarantee.

    So I'm looking forward to watching this continue to grow, to continue to participate with you. I've learned my lesson. I thank you. Congratulations on this, I look forward to seeing more of what's happening, particularly in the next session. Thank you very much.

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