WEBVTT
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It's October 29th, and we have a lot to talk about.
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Last week, about 8,000 MS researchers and clinicians arrived in Toronto,
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Canada for MS Toronto 2026,
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the joint meeting of the Americas Committee for Treatment and Research in MS,
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and the European Committee for Treatment and Research in MS,
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and the largest MS research conference in the world.
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This past Friday, as the meeting adjourned and the thousands of attendees headed
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for the exit, the National MS Society's Chief Research and Medical Affairs Officer, Dr.
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Bruce Bebo, joined me in what quickly became a deserted meeting area,
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and Bruce shared some of the presentations and announcements that he found particularly important.
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In a moment, we'll hear my conversation with Dr. Bruce Bebo.
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We have reached my absolute favorite part of an Ektrums Actrums meeting,
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and that is the time I get to spend right after the meeting adjourns.
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And people are leaving for their cars, their trains, their planes, and Dr.
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Bruce Bebo is always kind enough to stick around after the bell has sounded
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and give us his first impressions on some of the hot topics discussed at this
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year's MS Toronto 2026 meeting. Good to see you, Bruce.
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Great to be here, Jon. You know, I enjoy this as much as you do every year.
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We're not outside this year, though.
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As boys from the West Coast, weather has dictated we stay inside this year.
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But nonetheless, here we are.
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Tell me, what are some of the things that really are top of mind for you as you leave the meeting.
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Sure. So this was an amazing meeting. There's about 8,000 scientists from over
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100 countries here in Toronto this week.
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And I think the science that I heard here really reflected an evolution I could
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see in MS research. So we're moving beyond just relapse control.
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We're moving towards addressing the actual chronic inflammation and progression.
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We're moving toward diagnosing MS earlier and more accurately,
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which is an important topic.
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And we're really exploring this concept of prevention.
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So I'm excited about all of those things. So let me, got a few topics to share
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with you. So one, we can't not talk about the Bruton tyrosine kinase inhibitors
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or BTK, which is a little easier to say.
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So that was a big news this week at the ECTRIMS meeting. Some new phase three
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findings from a couple of different trials of BTK inhibitors.
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So let's talk about fenebrutinib. That's one of them.
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Fenebrutinib showed a 55% reduction in the rate of relapses,
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not against placebo, but against the comparator drug. In this case,
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teriflunomide, or many of you know, this is Aubagio.
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Those new findings really strengthen the evidence that this agent can affect
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markers also of chronic inflammation in the nervous system.
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So these could be markers for things that are driving progression.
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So in another trial of phenobrutinib called Fentrepid, it's kind of a cool name,
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phenobrutinib demonstrated a benefit on disability progression.
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In primary progressive MS. And that was compared to ocrelizumab,
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which many of you know as Ocrevus.
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So the magnitude of the benefit was not terribly high, but I think this is a
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real sign that we're starting to address some of the underlying biology that's
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driving progression. And then let's talk about the other BTK inhibitor, remibrutinib.
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So there were two trials reported out, remodel one and remodel two, so two separate trials.
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They both met their primary endpoints of reducing relapse rates.
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The two different trials reduced relapse rates by 35% and 32% respectively.
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Also, again, compared to a teriflunamide, they had really good data from MRI
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lesion activity, inflammatory activity was dramatically reduced.
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And then they looked at a kind of pooled analysis across the two trials at looking
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at progression activity, and they saw a modest.
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Real effect on reducing by about 29% reducing confirmed disability progression.
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So the real cool thing about the
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remebrutinib trial was there was no liver toxicity signal in that study.
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So this class of medications has a known risks of liver toxicity.
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And some of you might remember talabrutinib had a very strong liver toxicity
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signal and was ultimately dropped by the company because of that safety signal.
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So this was a real concern for these two agents.
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But I was really pleased that there was no liver toxicity signal in the remibrutinib.
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So I think these two trials suggest a really strong case for these are oral
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molecules and that this may be a really important new additional treatment.
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This obviously has to get reviewed by the regulators and approved.
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And then I think we'll have to wait for more data on how durable these responses
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are and more about safety and more how about the kind of comparative effectiveness
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of how these work with other treatments.
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You know, that kind of brings up another issue associated with these treatments.
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As you mentioned, they're oral medications.
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Right now, the only approved medication for progressive MS is typically by infusion.
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And I'm wondering if the convenience of an oral medication means easier, better adherence to,
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Yeah, I think what I know about that, John, is it's very personal to individual
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what their preferred route is. Some people like to go in and have an infusion
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once every three months or four months.
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They don't have to worry about taking something every day. They get it out of the way.
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But some people don't like getting IV infusions and want an oral therapy.
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So I understand these would be twice daily medications that,
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you know, have oral medications. So I think it's very personal and individual,
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which administration is more convenient to you.
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Well, I think at best, or perhaps at least, you have options now and you can
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choose something that's going to work best for you.
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Yeah. Options are really great. Yeah.
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What else caught your eye?
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So I'm really bullish and excited about this concept of being able to identify
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people at risk for MS and screen them for the first early indications of MS
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and get people diagnosed much quicker.
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We're really leveraging the new diagnostic criteria, the 2024 McDonald diagnostic criteria.
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So there was some real-world data presented this week that illustrated the impact,
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of the diagnostic criteria. So this was a six-center study in Europe.
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It included 423 people, and it looked for suspected MS.
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And the median time to diagnosis went from 16 months to just about four months
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using the new diagnostic criteria compared to the old criteria.
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That represents a reduction of almost a year in the time it takes for somebody to get diagnosed.
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Of course, early diagnosis can mean less uncertainty for people,
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means a better, faster opportunity to get on an appropriate treatment,
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The challenge, of course, is implementation of these criteria.
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And implementation at the same time as getting the diagnosis accurate.
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And so that accurate diagnosis was really illustrated, of course,
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this week by Christina Applegate's story of being misdiagnosed with MS.
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So that there's always a tension between diagnosing MS early and wanting that
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opportunity to get treatment at the earliest stages of disease and not misdiagnosing somebody.
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So our goal really is really clear. It's to get a clear diagnosis and get it
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right so that people can get on a medication that will work for them.
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And then I'm going to pivot to another really super interesting talk,
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but this was like an EBV meeting.
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There was so many research studies this week on Epstein-Barr virus.
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Of course, people will likely remember recent studies that have shown a dramatically
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elevated risk for developing MS if you've been exposed to Epstein-Barr virus.
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I think there's really a long-term opportunity here to translate this understanding
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or knowledge of EBV into a strategy that could prevent MS or treat MS.
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So I was at a session about EBV vaccination and perhaps, again,
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this idea of identifying people at risk for MS, vaccinating them against EBV,
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and potentially even preventing the disease.
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And there's also been evidence presented this week and in this year looking
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at the possibility that EBV reactivation inside of a person's body might actually
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be triggering relapses.
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So some kind of vaccine or antiviral approach to inhibiting Epstein virus in
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our bodies could also be a strategy for treatment. There was just a ton of stuff this week on EBV.
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And it's fascinating to me that there has been this very significant addition
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to the research portfolio all under the word prevention.
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We hadn't always heard a lot about that, but over the last year,
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we're hearing it louder and louder, aren't we?
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We sure are. And we're listening. So the National MS Societies of Canada and
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Australia, along with a coalition of other MS societies, including the U.S.
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MS Society, are working together to identify opportunities and fund new research
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opportunities to get us closer to this idea of being able to prevent MS from
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happening in the first place.
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I think it starts by identifying people that are at risk for MS.
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And we have some really good, I'd say, hints about how we might be able to do that.
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It might be, I think, a milestone towards prevention. We'll be identifying people
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with only radiological evidence of MS and maybe biomarker evidence of MS without any clinical signs.
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We can treat people now with radiologically diagnosed MS. And so that's a milestone towards prevention.
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Identifying people earlier and earlier and earlier, and perhaps to the point
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where before the central nervous system's involved, and we could stop it before
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it even gets started. I see this trajectory happening.
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That's exciting.
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So a few other things before we wrap up, John. There was some interest this
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week in presentations on CAR-T therapies, and people have probably been hearing about that.
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CAR stands for chimeric antigen receptor, which probably doesn't help you out very much either.
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But essentially, these are your own immune cells that get pulled out of your body.
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They get genetically engineered to express a receptor on their surface that
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then they get put back into your body, and then they can go attack whatever
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specific cell that those cells have been engineered to kill.
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So in the case of MS, CAR T cells are being developed to attack the B cells
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that we think play a critical role in the evolution of MS.
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Remember, these B-cells are the target of drugs like Ocrevus and Kesimpta.
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There's several companies developing these CAR-T cell approaches for MS.
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They're in trials. You may have heard on the news, some of those trials have
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been stopped for safety issues. Some of them continue.
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I heard some news this week around some of those safety issues.
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I think that sponsors have identified the cause of those safety issues and can fix that.
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So I was encouraged to hear that we might be able to overcome some of the safety
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issues around CAR-T that we've heard in the news. So I'm pretty excited about that possibility.
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CAR-T could be a therapy that might be what is called an induction therapy,
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where you would get one treatment.
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And your immune system would reset and you would never need another treatment again.
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Still in very early clinical trials, but that'll be the next thing.
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The next meeting, John, we'll probably talk more about CAR-T and meeting after that.
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And then a couple, I'm thinking about how we individualize treatment too.
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I mean, everybody's journey with MS is different.
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Their course is different. There are aspects about a person that sometimes can drive that difference.
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So, for example, there were a lot of presentations this week on women's health
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and MS, talking about and presenting new findings addressing how menopause and
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hormone replacement therapy contribute to women's health and MS.
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I saw reassuring data that can help inform clinical decisions,
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although, of course, treatments need to be individualized to the issue.
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And then there's interesting presentations on aging and MS.
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So for older adults that have stable disease, research on treatment discontinuation
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and personalization, like kind of extending dosing possibly are also being examined.
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There's some interesting studies on that this week as well.
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Once again, I think you've hit all the high points that I certainly was aware
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of. And roughly a year from now, I'll meet you in Vienna and we can do this again.
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I'm looking forward to it, Jon. And we'll even have more exciting things to talk about next year.
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Dr. Bruce Bebo, safe travels.
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Thank you, Jon. You too.
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My RealTalk MS teammate, Kristine Werner Ozug, also joined me in Toronto.
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Drawing on her own journey with MS, Christine brings invaluable personal insight to the table.
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In a moment, Christine will share the research and critical conversations that
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she's taking away from MS Toronto 2026.
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One of the advantages I have when I go to a major MS research conference is
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I go with the producer of RealTalk MS, Kristine Werner-Ozug.
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And not only is she an excellent producer, but Christine lives with MS,
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which gives us an opportunity to get the perspective on all of these announcements,
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all of these hundreds of presentations
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from someone who's going to be affected by them.
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Kristine, tell me about the meeting.
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It certainly was a great meeting, and it was jam-packed as usual.
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We had about 8,000 attendees, hundreds of presentations, and thousands of posters.
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And the theme this year was Unifying MS.
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Which really comes down to understanding MS as one disease being diagnosed under a unified framework.
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And the opening session was given by Dr.
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Daniel Reich of the Translational Science area
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of NINDS, which is the National Institute of Neurological Disorders and Stroke. of the NIH.
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And he had a really interesting narrative about how researchers came together
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across the world, particularly North America and Europe, to
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move imaging research forward.
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And particularly imaging research around reaching consensus on the central vein
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sign, which got added to the criteria that's needed to diagnose MS.
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And we recently heard about the central vein sign in the news because Christina Applegate
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actually found out she does not have MS because of the lack of the central vein sign in her lesion.
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We should probably explain that what the central vein sign is, as it implies.
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A vein that can be seen in every MS lesion.
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So when somebody looks at MRI scans and they don't see a central vein sign,
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they may be looking at a lesion, but they're not looking at MS, right?
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Very often than not. And this will help speed up diagnosis of MS and a more
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accurate diagnosis of MS.
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So hopefully it won't take people over five years. like it took me to receive my diagnosis.
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What else at the meeting caught your eye or made an impression on you that you
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think could be important?
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So we did hear some updates on CAR T-cell therapy, which I know a lot of people are interested in.
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And CAR T-cell therapy has different mechanisms and the way it works and there's
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still trials going on and we did a great interview with Dr.
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Jeff Cohen of the Cleveland Clinic where he talks in more detail about this
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but I think the bottom line for people like me living with MS is that
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these are still in trials and there are still
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safety risks that they're working out and they're still determining who the
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best candidates are for these therapies and what types of
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therapies are going to work better than others.
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What type of precision medicine approach is going to be most appropriate for whom and what
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stage of MS and what type of underlying MS somebody has, an inflammatory or
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more progression-driven type of MS.
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We also heard a really nice presentation from Dr. Robert Fox from the Cleveland Clinic.
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And he's also the chair of the Scientific Steering Committee of the International
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Progressive MS Alliance.
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And he gave an update on the priorities of the alliance, as well as talking
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about what the unmet needs are in progressive MS.
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And we also heard from two researchers that had won grant awards from the Alliance
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and the studies that they're working on to
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address progression in MS.
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And I would encourage everyone that's interested to listen to our interview with Dr.
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Robert Fox and check out the Alliance's
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website and their initiatives because they are working hard in collaboration
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with organizations all around the world to help
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fund treatments and to understand the drivers of progression. and MS.
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What else did you see or hear that you found interesting?
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We did hear from Dr.
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Calabresi about the biological
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mechanisms in MS and how that could change the way we describe MS and the way
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we describe MS now, which we know as relapsing
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MS, secondary progressive MS and primary progressive MS.
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And the more we understand about the biology of MS and the
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cellular mechanisms that drive inflammation and progression,
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the better we get at identifying biomarkers.
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And biomarkers can be things that we see when we take blood, or we can see when we do
00:20:37.920 --> 00:20:45.240
a spinal tap in the spinal fluid, or they can also be in imaging.
00:20:45.500 --> 00:20:48.820
So as we just talked about, the central vein sign.
00:20:48.940 --> 00:20:56.620
And the better we get at identifying those things, the more we can create targeted
00:20:56.740 --> 00:21:03.880
treatments for progression and create precision medicine plans for people.
00:21:03.990 --> 00:21:11.260
And so how we describe MS, it was going to change in the future.
00:21:12.340 --> 00:21:17.890
That speaks to exactly what the theme of this meeting was, as you pointed out.
00:21:18.470 --> 00:21:23.940
Unifying MS, as you mentioned, means coming away from the terms that we use
00:21:23.940 --> 00:21:28.060
today, like relapsing, secondary progressive, primary progressive,
00:21:28.480 --> 00:21:32.150
recognizing that it's multiple sclerosis.
00:21:32.850 --> 00:21:41.420
It's MS and different people are experiencing different things going on in their
00:21:41.420 --> 00:21:42.650
central nervous system.
00:21:43.980 --> 00:21:48.310
Those things that are happening, those mechanisms that are being biologically
00:21:48.310 --> 00:21:55.700
driven are what are creating symptoms, what are creating progression, all of the above.
00:21:56.410 --> 00:22:06.120
And so the more we can fine-tune how we describe those various stages or phases of MS,
00:22:08.000 --> 00:22:14.600
The easier it is to identify those biological targets so that pharmaceutical
00:22:14.600 --> 00:22:20.340
companies can create medications specific to those targets.
00:22:20.340 --> 00:22:25.370
We always say if you see 10 people with MS, it sometimes feels like you're looking
00:22:25.370 --> 00:22:30.810
at 10 different diseases because they can each be affected so differently.
00:22:31.150 --> 00:22:34.230
Somebody can have really significant mobility challenges.
00:22:34.590 --> 00:22:38.890
Someone else may have no mobility challenges, but may have more invisible symptoms.
00:22:38.890 --> 00:22:42.970
And everything in between those two extreme examples probably exists.
00:22:43.770 --> 00:22:48.680
And yet, even though we understand how individualized the disease presents,
00:22:49.140 --> 00:22:51.490
not just clinically, but biologically, Exactly.
00:22:53.180 --> 00:22:58.580
Everybody gets treated the same right now. And that doesn't make a lot of sense.
00:22:58.580 --> 00:23:03.120
It used to when we didn't understand as much about MS as we do today.
00:23:04.080 --> 00:23:09.880
But as science has learned so much more, we can start being a lot more focused
00:23:10.570 --> 00:23:12.350
in treating individuals
00:23:13.190 --> 00:23:18.950
for where they are in that moment, as opposed to where most people seem to be
00:23:18.950 --> 00:23:24.650
when they have relapsing, or even what I consider a worse course descriptor,
00:23:24.890 --> 00:23:26.250
secondary progressive.
00:23:27.650 --> 00:23:35.130
Secondary progressive MS is pretty confusing. First, it can only be diagnosed in retrospect.
00:23:36.580 --> 00:23:41.090
It only gets diagnosed once you are living with greater progression.
00:23:41.480 --> 00:23:48.640
But as you point out, if biomarkers can let your neurologist know things are
00:23:48.640 --> 00:23:52.400
changing before they fully manifest in an individual,
00:23:53.440 --> 00:23:57.730
we get to much better treatment much sooner and therefore better outcomes.
00:23:58.170 --> 00:23:59.570
That's how I kind of see it.
00:24:00.580 --> 00:24:08.580
I agree. And I think we have several issues right now with medications not being
00:24:08.980 --> 00:24:12.310
available for secondary progressive.
00:24:12.310 --> 00:24:19.830
And oftentimes your diagnosis may not reflect truthfully where you are in your
00:24:19.830 --> 00:24:24.950
disease because of the lack of availability for medications.
00:24:25.520 --> 00:24:33.380
So sometimes you may be labeled a certain way so you have access to medications.
00:24:33.380 --> 00:24:42.190
And we actually heard that in some of the presentations that clinicians admitted labeling people RMS
00:24:42.730 --> 00:24:49.270
If they were in a secondary progressive course, so they would have access to medications.
00:24:49.580 --> 00:24:54.180
And I think this is something that everybody is aware of.
00:24:54.320 --> 00:24:59.080
And it also presents problems with clinical trials.
00:24:59.400 --> 00:25:03.770
And one of the presentations we heard, and it made total sense to me,
00:25:04.000 --> 00:25:13.560
are we mixing participants with different types of pathology in these clinical trials?
00:25:13.560 --> 00:25:21.590
And are we getting true outcomes when it comes to testing different types of medication?
00:25:21.590 --> 00:25:29.690
So it just makes sense from so many different standpoints that we all have MS.
00:25:29.990 --> 00:25:36.190
And I remember when I was diagnosed, it was multiple sclerosis.
00:25:36.470 --> 00:25:43.930
And my diagnosis letter, sometimes you need a diagnosis letter for various reasons.
00:25:44.080 --> 00:25:52.770
And my diagnosis letter says multiple sclerosis is a chronic progressive disease with no cure.
00:25:53.150 --> 00:26:02.770
Symptoms may include, and it lists several symptoms, but it doesn't stay this type or that type.
00:26:02.960 --> 00:26:05.930
And so that's how I've always lived.
00:26:06.290 --> 00:26:09.460
And I had never really subscribed.
00:26:10.410 --> 00:26:14.290
My MS to a certain type of MS.
00:26:14.290 --> 00:26:21.030
And I think the takeaway from all of the different presentations I heard and
00:26:21.410 --> 00:26:28.090
unifying MS, especially after I talked with several patients during patient day.
00:26:28.490 --> 00:26:35.040
And as we talked, I could tell there's a lot of confusion about a lot of the
00:26:35.040 --> 00:26:39.990
terms that have been introduced in the past few years, Pira
00:26:40.590 --> 00:26:45.910
and Raw, because they're now questioning where they are today,
00:26:46.390 --> 00:26:53.440
even though their diagnosis hasn't changed, the way they feel hasn't necessarily changed.
00:26:53.440 --> 00:27:00.350
But now they're wondering exactly where they're at and if their treatment plan
00:27:00.350 --> 00:27:07.510
should change. And so this caused me to reflect a lot after the conference.
00:27:07.610 --> 00:27:10.760
And my conclusion is, for me,
00:27:11.400 --> 00:27:15.100
and I don't know if this could help people, is what do I need to do
00:27:15.840 --> 00:27:23.460
in the meantime when science needs to reach consensus on what we call MS as
00:27:23.460 --> 00:27:30.500
we're waiting for new treatments to be developed and more close on a lot of the might be.
00:27:31.460 --> 00:27:35.990
Let me also insert something real. Sure. I don't want anybody to think that
00:27:37.270 --> 00:27:38.900
things are about to change.
00:27:39.960 --> 00:27:45.990
Things will change, but not today, not tomorrow, probably not the next day, only because
00:27:47.440 --> 00:27:54.840
all the stakeholders involved here. You've got the neurologists in the clinics.
00:27:56.200 --> 00:27:59.170
You have the FDA, the regulatory people.
00:27:59.920 --> 00:28:05.890
You have the insurance companies who right now factor all their decision-making
00:28:05.890 --> 00:28:11.620
based upon whether you've been diagnosed as relapsing-remitting or secondary-progressive
00:28:11.620 --> 00:28:13.010
as you mentioned earlier, right?
00:28:13.450 --> 00:28:18.970
So the insurance companies have to come on board with whatever the next iteration
00:28:19.260 --> 00:28:21.590
of describing MS turns out to be.
00:28:21.980 --> 00:28:26.540
So lots of people at the table, work underway,
00:28:27.050 --> 00:28:32.260
but this is something that is going to take a very long runway and spend this
00:28:32.260 --> 00:28:38.480
amount of education for everybody impacted today before things change.
00:28:38.480 --> 00:28:42.960
So the nice thing about meetings like this is they kind of give you a glimpse
00:28:42.960 --> 00:28:50.800
into the future because you see where the research is being focused and how it will one day play out.
00:28:51.410 --> 00:28:55.880
But I just want to point out as you're talking about this, that.
00:28:57.890 --> 00:29:04.070
It's coming, but nobody's knocking at the door today with a new set of descriptions.
00:29:05.060 --> 00:29:11.870
And yeah, what I was meaning to say is, as we're waiting for science to reach
00:29:11.870 --> 00:29:15.700
consensus, it's important for that to occur first.
00:29:16.570 --> 00:29:24.770
We need that to happen so we can take the plan, the proposal to all of those
00:29:25.510 --> 00:29:34.640
stakeholders in mind and share it and say that this is what we think and we want your input.
00:29:35.680 --> 00:29:40.580
What are your thoughts? And even patience and say, what are your thoughts?
00:29:40.580 --> 00:29:46.320
And I'll come together and reach consensus, hash it out and reach consensus.
00:29:46.320 --> 00:29:50.410
But yes, there are many, many people that are going to be involved.
00:29:51.240 --> 00:30:03.650
And so with that in mind, I started thinking, what do I need to do to unify my own MS life?
00:30:05.310 --> 00:30:11.520
Because nothing, even if they change tomorrow, even if course descriptors change tomorrow,
00:30:13.030 --> 00:30:25.490
Nothing is going to change the way I am feeling and my treatment plan and
00:30:26.650 --> 00:30:28.940
anything on my imaging.
00:30:29.740 --> 00:30:36.800
So what I need to do is make sure I take stock of my health care team.
00:30:37.870 --> 00:30:45.750
Am I happy with them? Am I communicating with them as best as I can be?
00:30:46.660 --> 00:30:52.570
Am I asking the right questions? Am I sharing my symptoms?
00:30:53.880 --> 00:30:58.600
And what about my quality of life? What are my goals?
00:30:59.270 --> 00:31:06.920
What are the things I want to make sure that I can do and want to still be able to do?
00:31:07.490 --> 00:31:10.840
And sharing that with my healthcare team.
00:31:11.310 --> 00:31:17.500
And are there strategies or things that I can work on to make sure that can happen?
00:31:18.230 --> 00:31:21.090
Is there any rehabilitation I can do?
00:31:21.860 --> 00:31:28.010
Is there physical therapy or occupational therapy? And then what about mental health?
00:31:28.340 --> 00:31:30.440
What about social support?
00:31:31.260 --> 00:31:36.800
All of these things that can unify my MS.
00:31:36.800 --> 00:31:41.410
So when the time comes and there are new treatments available,
00:31:42.750 --> 00:31:50.920
I can make sure I'm in the place mentally and physically to have that conversation
00:31:50.920 --> 00:31:54.960
because I have a good relationship with my health care team.
00:31:56.140 --> 00:32:03.560
And I have been keeping up with the information, but I'm not letting it paralyze
00:32:03.560 --> 00:32:07.760
me right now to say, am I a good candidate?
00:32:09.110 --> 00:32:20.640
Why or why not? And that's what this whole conference had me reflect on as we're moving towards
00:32:21.910 --> 00:32:31.380
unifying MS and working towards new treatments and the way we describe it.
00:32:32.380 --> 00:32:37.930
That's a really interesting way of taking the theme of this massive meeting,
00:32:37.930 --> 00:32:41.980
as you pointed out, with the hundreds of presentations, the thousands of posters,
00:32:41.980 --> 00:32:46.910
and really kind of synthesizing it into a set of steps for yourself, huh?
00:32:47.960 --> 00:32:57.430
Yes, because while everything was really interesting and the information is invaluable,
00:32:58.450 --> 00:33:04.320
right now, like you said, is there anything that is changing right now?
00:33:05.970 --> 00:33:13.570
And it's very difficult for people like me to say, oh, okay, unifying MS.
00:33:14.820 --> 00:33:21.310
How does that translate into my everyday life and in the clinic when I go to my visits?
00:33:21.670 --> 00:33:26.330
And that's very hard to recognize.
00:33:26.330 --> 00:33:33.090
It's not tangible yet. So I had to take all of that and somehow break it down
00:33:33.450 --> 00:33:37.780
and make it tangible for myself.
00:33:38.970 --> 00:33:52.310
And not be concerned with all of the terminology and things that are not in my control
00:33:53.370 --> 00:33:58.660
right now, but focus on the things I do have control over.
00:33:59.680 --> 00:34:08.590
One thing I heard repeatedly was how some of the lifestyle options,
00:34:08.590 --> 00:34:11.240
the choices that you were just describing,
00:34:12.720 --> 00:34:14.580
they're the things that can make
00:34:14.580 --> 00:34:18.940
a difference in quality of life for every single person with MS today.
00:34:19.820 --> 00:34:21.170
And I think
00:34:23.070 --> 00:34:28.550
Not only is that important information, but it's great information because these
00:34:28.550 --> 00:34:35.100
are things that don't require a pill or an injection or an infusion.
00:34:35.890 --> 00:34:40.300
And there are things that somebody can decide to start on today.
00:34:40.860 --> 00:34:44.470
I was going to say there are things that don't require a prescription,
00:34:44.470 --> 00:34:47.660
but I guess when we get into the rehabilitation side of things,
00:34:48.100 --> 00:34:49.830
that does require a prescription.
00:34:50.100 --> 00:34:54.140
On the other hand, even without rehab, even without physical therapy,
00:34:54.820 --> 00:34:59.520
there's plenty of evidence that indicates that exercise helps everyone with
00:34:59.520 --> 00:35:01.660
MS, no matter their level of ability.
00:35:02.300 --> 00:35:08.980
So someone who is much more progressed in their disease course may not be able
00:35:08.980 --> 00:35:16.820
to do some things, but there are other forms of exercise they can benefit from.
00:35:16.820 --> 00:35:23.670
So whether someone is heavily symptomatic or very lightly or perhaps no physical
00:35:23.670 --> 00:35:27.270
symptoms at all, everybody has a place to start.
00:35:27.270 --> 00:35:31.940
And that kind of stuff starts today, often for free.
00:35:32.970 --> 00:35:37.860
Yeah, we've talked about how exercise has neuroprotective benefit.
00:35:39.030 --> 00:35:44.270
And like you said, we don't have to wait for a pill or an injection for that.
00:35:44.270 --> 00:35:49.560
And, you know, what we're talking about right now reminds me of the interview
00:35:49.560 --> 00:35:57.460
we did with Professor Peter Faze. And he said, yeah, exercise is free. There's a park.
00:35:58.300 --> 00:36:00.050
You know, you can take a walk.
00:36:01.540 --> 00:36:05.080
Various types of exercise are free.
00:36:06.250 --> 00:36:12.910
And just getting out in nature for me is a good thing.
00:36:13.760 --> 00:36:21.240
So I think we've said this before, but we have neuroprotection right now.
00:36:22.620 --> 00:36:25.120
And we should all take advantage of that.
00:36:26.200 --> 00:36:29.970
I'm glad you mentioned getting out too. I think something that isn't talked
00:36:29.970 --> 00:36:39.620
about nearly enough is the isolation that living with MS can create for an individual.
00:36:40.330 --> 00:36:47.720
And those feelings of isolation, they're not kept neatly in a little box somewhere.
00:36:48.120 --> 00:36:54.020
They can infect so much of an individual's outlook on everything.
00:36:54.020 --> 00:36:57.100
They can impact your mood. They can drive depression.
00:36:57.470 --> 00:37:02.100
And all of that tends to make the isolation worse than it already was to begin with.
00:37:02.920 --> 00:37:10.320
I think making a point of just getting out in the world and interacting with
00:37:10.870 --> 00:37:14.250
the things, the people that you come in contact with,
00:37:15.010 --> 00:37:18.190
can be some of the best medicine anyone can take.
00:37:19.050 --> 00:37:26.520
I completely agree because I've been there and I understand what people living
00:37:26.520 --> 00:37:29.990
with MS goes through with isolation,
00:37:30.530 --> 00:37:37.590
but not being able to work anymore, you lose a big part of your social connections
00:37:37.590 --> 00:37:41.250
and your connection to the outside world.
00:37:42.140 --> 00:37:50.010
I've lost other activities that I was involved in where I had people
00:37:50.850 --> 00:37:59.200
and connections and it's yeah it's very difficult and then when you have depression
00:37:59.790 --> 00:38:04.470
from those things it's very hard to motivate yourself to want
00:38:05.290 --> 00:38:08.010
to get out or want to see people
00:38:09.050 --> 00:38:15.480
and you have to dig deep sometimes and make yourself and...
00:38:18.270 --> 00:38:24.460
And you do feel better once you do it, but it's very hard to get there.
00:38:24.600 --> 00:38:26.830
And I understand that.
00:38:27.540 --> 00:38:37.940
It sure is. I always think about depression as the 600-pound gorilla who is sitting right in front
00:38:39.330 --> 00:38:42.780
of your front door on the inside.
00:38:43.450 --> 00:38:49.440
And that gorilla's job is to keep you from opening that door and stepping outside
00:38:50.120 --> 00:38:53.880
because as soon as you do take away a lot of its power
00:38:54.590 --> 00:38:59.760
and it as you pointed out it's easier said than done but it's so important and
00:38:59.760 --> 00:39:06.840
again that's the kind of thing where no prescription necessary get outside yeah Yeah.
00:39:08.380 --> 00:39:09.210
Get out there.
00:39:09.340 --> 00:39:13.660
Did anything else catch your eye or make an impression on you during the meeting?
00:39:15.530 --> 00:39:26.970
We heard some really good results from some of the BTK inhibitor trials that sound promising.
00:39:28.670 --> 00:39:34.730
Again, some of the trials are still early, but they sound good,
00:39:34.880 --> 00:39:36.980
so we'll be following those.
00:39:37.770 --> 00:39:46.060
Dr. Robert Fox, in our interview with him, we asked him a little bit about a
00:39:46.060 --> 00:39:50.680
newer BTKI that's in some early studies,
00:39:51.610 --> 00:39:56.160
and results of fenebrutinib were announced.
00:39:57.020 --> 00:40:02.630
As well as remibrutinib, I believe.
00:40:04.520 --> 00:40:07.720
And those both look pretty good so far.
00:40:08.680 --> 00:40:09.100
So,
00:40:10.150 --> 00:40:17.060
BTK stands for Bruton's tyrosine kinase. BTK is a lot easier to say.
00:40:17.510 --> 00:40:24.060
And it fuels inflammation both in the central nervous system as well as the
00:40:24.060 --> 00:40:26.300
peripheral nervous system in the bloodstream.
00:40:26.870 --> 00:40:33.590
Now, a lot of disease-modifying therapies do a very good job of shutting down
00:40:33.590 --> 00:40:37.720
inflammation in your bloodstream, in the peripheral nervous system.
00:40:38.140 --> 00:40:41.680
The problem is they can't penetrate the blood-brain barrier,
00:40:41.960 --> 00:40:48.290
so they can't get to those inflammatory B-cells that are inside the central nervous system.
00:40:48.790 --> 00:40:53.500
The interesting thing about the way a BTK inhibitor seems to work
00:40:54.260 --> 00:40:59.980
Is some of them have the ability to penetrate the blood-brain barrier,
00:40:59.980 --> 00:41:05.780
so they're taking care of that inflammatory activity everywhere.
00:41:06.530 --> 00:41:11.880
And they all work a little differently. So we'll have to see what the final
00:41:11.880 --> 00:41:16.120
outcome is when it comes to some of those medications getting to market.
00:41:16.590 --> 00:41:21.240
You mentioned fenobrutinib. That's already been submitted to the FDA for approval
00:41:21.390 --> 00:41:26.420
because the results were quite positive from the phase three clinical trial.
00:41:26.710 --> 00:41:30.970
And we'll see what happens as more of them move along the pipeline.
00:41:31.250 --> 00:41:35.950
And again, if somebody watching or listening to this is thinking,
00:41:36.440 --> 00:41:40.590
gee, if we have one, why do we need the rest? It's the same reason we have so
00:41:40.590 --> 00:41:42.890
many other disease-modifying therapies.
00:41:43.160 --> 00:41:49.050
As most people know from their own personal experience, different disease-modifying
00:41:49.050 --> 00:41:51.990
therapies work better for different people.
00:41:52.430 --> 00:41:57.470
And so one may not be ideal, but another one could be quite effective.
00:41:57.470 --> 00:42:01.770
Hopefully there's going to be something that, or some things available that
00:42:01.770 --> 00:42:04.870
will make for very strong options for lots of people.
00:42:05.860 --> 00:42:13.220
Yeah, they explained that there's different agents, is the term they use,
00:42:13.220 --> 00:42:19.180
of the medications in this class. So they don't work exactly the same.
00:42:20.490 --> 00:42:25.290
And we'll see which horse wins the race first.
00:42:26.300 --> 00:42:35.950
Yes, we will. There's a few horses in the race. And then there's Fruxalamab, which is the anti-CD19,
00:42:39.070 --> 00:42:43.440
and that had quite good results as well.
00:42:45.220 --> 00:42:54.140
So there's a few different options, it looks like, that are hopefully going to become available.
00:42:55.160 --> 00:42:59.080
We hope so. There's always room for better medication.
00:42:59.890 --> 00:43:03.750
I appreciate your sharing your perspective, your takeaways from the meeting.
00:43:03.750 --> 00:43:08.030
I especially, as I mentioned, I like the way you seem to find a way to personalize
00:43:08.030 --> 00:43:11.570
what unifying your MS means to you. I like that.
00:43:12.220 --> 00:43:18.360
And I'll tell you what, why don't we meet up again the first week of March when
00:43:18.360 --> 00:43:22.790
the Americas Committee for Treatment and Research in MS, Actrums,
00:43:22.980 --> 00:43:24.880
holds its annual meeting.
00:43:25.860 --> 00:43:28.950
I like that plan. Thank you.
00:43:30.000 --> 00:43:34.760
That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered
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MS Toronto 2026 gave me an opportunity to talk about cutting-edge science and
00:44:48.780 --> 00:44:53.260
emerging MS therapies with some of the top MS experts in the world.
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I hope you'll join me for more of those conversations next week as our coverage
00:44:58.230 --> 00:45:01.320
of MS Toronto 2026 continues.
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I'm Jon Strum. Thanks for listening. Stay safe and make healthy choices.
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