Apple Podcasts 
Spotify Sept. 14, 2026
Episode 472: ECTRIMS-ACTRIMS Patient Community Day Preview with Brett Drummond and Dr. Jennifer Graves
Key Takeaways
- The joint ECTRIMS-ACTRIMS Scientific Congress, known as MS Toronto 2026, features a dedicated Patient Community Day designed specifically to make complex research accessible to people living with MS.
- A landmark 22-country European survey revealed that people with MS live with an average of 13.7 concurrent symptoms, with invisible symptoms like fatigue and cognitive impairment being critically unmanaged.
- Researchers at the University of Zurich have developed a precision red blood cell therapy designed to halt myelin attacks without broadly suppressing the rest of the immune system.
- A novel German research project is developing a low-dose theophylline skin patch to safely and continuously promote natural myelin repair.
- Automated speech analysis of short voice recordings shows strong potential for predicting future gray matter loss and cognitive changes in people with multiple sclerosis.
- Brett Drummond and Dr. Jennifer Graves emphasize the importance of direct dialogue and collaboration between medical researchers and the MS patient community.
We are less than 40 days away from MSToronto2026—the joint ECTRIMS/ACTRIMS Scientific Congress. While the congress brings together the world's leading MS researchers and clinicians, Patient Community Day —in person and online—is designed specifically for people affected by multiple sclerosis. This week, Dr. Jennifer Graves and Brett Drummond join me to preview what to expect from Patient Community Day 2026.
With less than 50 days until the midterm elections in the United States, the National MS Society is hosting a webinar you can't afford to miss, titled MS Advocacy in Action: What the 2026 Elections Could Mean for Healthcare Policy and Access to Care. We'll tell you how to register (And we'll remind you why you should!).
A 22-country survey of over 17,000 people with MS revealed that the invisible symptoms of MS remain critically unaddressed. We're sharing the details of this landmark survey.
We're sharing early trial results of a precision red blood cell therapy designed to halt myelin attacks without shutting down the immune system.
We'll tell you about the German research team that's repurposing a common, low-cost medication into a skin patch designed to jumpstart natural remyelination.
And we'll share a study showing how simple, short voice recordings can predict long-term cognitive changes and brain volume loss in people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: A preview of Patient Community Day 2026 :22
The National MS Society is hosting a webinar you shouldn't miss 1:32
Results of a landmark survey reveal critical unmet needs among people living with MS 5:27
A new approach to preventing MS inflammatory attacks while keeping the rest of the immune system intact 8:27
Could a skin patch successfully promote myelin repair? 11:42
Can analyzing regular speech predict future brain atrophy in people with MS? 14:34
Dr. Jennifer Graves and Brett Drummond give us a preview of Patient Community Day 2026 18:53
Share this episode 33:01
Next week 33:20
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
REGISTER: ECTRIMS Patient Community Day 2026
https://ectrimspatientcommunity.eu
WEBINAR: Advocacy In Action: What the 2026 Elections Could Mean for Healthcare Policy and Access to Care
https://nmss.quorum.us/event/37051
STUDY: Impact of Multiple Sclerosis Symptoms Survey: Patient-Reported Data on the Prevalence, Burden, and Management of Multiple Sclerosis Symptoms in Europe
https://journals.sagepub.com/doi/10.1177/13524585261480514
STUDY: Treatment of Multiple Sclerosis with Peptide-Coupled Red Blood Cells Induces Antigen-Specific T Regulatory Cells
https://pnas.org/doi/abs/10.1073/pnas.2614908123
STUDY: Automated Speech Analysis Reveals Progressive Linguistic Changes Associated With Subsequent Gray Matter Loss in Multiple Sclerosis
https://journals.sagepub.com/doi/full/10.1177/13524585261477213
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REVIEW: Give RealTalk MS a rating and review
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RealTalk MS Episode 472
Guest: Brett Drummond and Dr. Jennifer Graves
Frequently Asked Questions
What is ECTRIMS Patient Community Day?
ECTRIMS Patient Community Day is an event tailored specifically for people affected by multiple sclerosis, translating complex scientific research from the joint ECTRIMS-ACTRIMS congress into clear, accessible language.
How do invisible MS symptoms impact patients according to recent surveys?
A 22-country survey found that while 86% of respondents were on a disease-modifying therapy, only about one in five felt that invisible symptoms like fatigue, cognitive impairment, or sexual dysfunction were well managed.
How does the experimental red blood cell therapy for MS work?
The therapy attaches myelin protein fragments to a patient's own red blood cells, which are then cleared by the spleen and liver to retrain the immune system to stop attacking myelin without weakening the entire immune system.
Can speech analysis predict brain volume loss in MS?
Yes, studies show that automated speech analysis capturing declines in vocabulary diversity and increased repetition over time are significantly associated with subsequent gray matter loss in the brain.
WEBVTT
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It's September 15th, and we have a lot to talk about.
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We're less than 40 days away from the joint meeting of the European Committee
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for Treatment and Research in MS and the Americas Committee for Treatment and Research in MS,
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the joint ECTRIMS-ACTRIMS Scientific Congress, known this year as MS Toronto 2026.
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And while the presentations made during this meeting are high-level scientific
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presentations, ECTRIM's Patient Community Day is tailored specifically not for
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scientists and clinicians, but for people affected by MS.
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Joining us with a special preview of Patient Community Day 2026 are Dr.
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Jennifer Graves and Brett Drummond.
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Dr. Graves is a professor and vice chair of human clinical research and division
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head of neuroimmunology at the University of California, San Diego.
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And my longtime friend, Brett Drummond is the host of the ECTRIMS podcast and
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the voice of ECTRIMS patient community day.
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But before we get to Brett, Dr. Graves, and our preview of patient community
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day, 2026, there are a few other things that you should know about.
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Not only are we less than 40 days away from the joint ECTRIMS-ACTRIMS Scientific
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Congress, we're less than 50 days away from the midterm elections in the United States,
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and unfortunately, health care access and future funding for medical and scientific
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research are very much on the ballot.
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In the current Congress, one party decided not to extend enhanced tax subsidies
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for millions of Americans who get their health insurance through the online
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health insurance marketplace at healthcare.gov.
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The same party has radically remade Medicaid, reducing funding to every state,
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and raising requirements that can be difficult for anyone living with a disability to meet.
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The result of this congressional action has been clear. Between 8 and 10 million
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Americans have lost their health insurance this year.
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And that's only this year.
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In the current Congress, we saw one party eliminate all funding for the MS Research Program.
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Fortunately, a significant lobbying effort on the part of MS activists and the
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National MS Society resulted in 75% of that funding being made available a year
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later, bringing the MS Research Program back from the dead.
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I want to add that in thinking about this segment, I tried to maintain a nonpartisan
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perspective, and I realize everything I just said doesn't sound nonpartisan,
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but the name of this podcast is Real Talk MS.
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And these draconian cuts in funding, this philosophy of relegating people living
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with MS and every other disability to the back of the bus in America,
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it's been the exclusive work of one party, and I'm not going to try to spin
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that any differently because it would be a lie.
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Now, I'm not here to tell you how to vote or who to vote for,
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but I will strongly suggest that every person living with MS or any chronic
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illness should vote in their own best interest.
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And I believe that is being nonpartisan.
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We've had two years to observe and judge the actions, not the rhetoric,
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but the actions of the majority party in Congress and our incumbent congressional lawmakers.
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Now it's our turn, through our vote, to determine whether this country is on the right track or not.
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With less than 50 days until the midterm congressional election,
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we'll have more to say on this subject.
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But this could be the most consequential election in our country's history,
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and I hope 100% of the Real Talk MS listener community in the United States
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is planning to support the candidates that support them and their needs and
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vote on behalf of their own self-interest.
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To that end, on September 22nd at 12 p.m.
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Eastern Time, 9 a.m. Pacific, the National MS Society is hosting a webinar entitled
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MS Advocacy in Action, What the 2026 Elections could mean for health care policy and access to care.
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The webinar will feature Nathaniel Weixel, the health care reporter for The Hill,
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and a discussion focused on the election landscape, the legislative landscape
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ahead, and what the results could mean for people affected by MS.
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You can register for the webinar at nmss.quorum.us, that's nmss.quorum.us,
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forward slash event, forward slash 37051.
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You'll find that link in today's show notes. And if the timing of this event
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doesn't happen to fit your schedule, a recording of the webinar will be sent
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to all registered participants following the live event.
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Whether live or afterward, I hope you make time for this webinar.
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A new study provides an unprecedented look at what day-to-day life actually
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feels like for people living with MS, and more importantly, exposes significant
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gaps in how MS symptoms are being managed.
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Led by the European Multiple Sclerosis Platform, the Impact of Multiple Sclerosis
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Symptoms Survey collected patient-reported data from more than 17,000 people
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living with MS across 22 European countries.
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On average, respondents reported living with 13.7 concurrent MS symptoms.
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99% of the survey respondents reported experiencing at least one symptom,
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with the top five most prevalent symptoms identified as fatigue,
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sensory issues, sleep disturbances, cognitive impairment, and balance problems.
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And what makes that list interesting is all but one of the top five most prevalent
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MS symptoms are invisible symptoms.
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And while about 86% of the survey respondents indicated they were on a disease-modifying
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therapy, the survey data reveals an interesting divide between visible and invisible symptoms.
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While respondents were twice as likely to report satisfaction with the management
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of visible physical challenges like mobility, spasticity, and bladder issues,
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only about one in five respondents felt their fatigue, cognitive impairment,
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or sexual dysfunction were well managed.
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On average, survey respondents were being treated by 4.2 different health care
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professionals, but only half reported experiencing coordinated care between
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their providers, and more than a third reported no coordination at all.
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Fewer than a quarter of the survey respondents indicated they were accessing
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health professionals who specialize in non-pharmacological symptom management,
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like occupational therapists, physical therapists, and clinical psychologists.
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This landmark study provides clear evidence for what so many people in the MS
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community express every day.
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Successfully managing MS requires far more than just writing a prescription for a DMT.
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It requires an integrated, multidisciplinary approach that takes invisible symptoms seriously.
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So when you're in front of your healthcare team at your next appointment,
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be sure to bring up all the symptoms that aren't visible during that routine exam.
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Whether it's brain fog, chronic fatigue, changes in sleep, sexual dysfunction, or something else.
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You don't have to navigate these symptoms alone, and calling them out is the
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first step in making occupational therapy or specialized lifestyle support part
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of your overall care plan.
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Now, if you'd like to review the details of this study, you'll find that link in today's show notes.
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Current disease-modifying therapies do an exceptional job of reducing relapses
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and slowing progression.
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But they generally work by broadly depleting large segments of immune cells,
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which increases an individual's risk of infection.
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So, I guess if there's a holy grail in MS research, it might be finding a way
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to stop the immune system from attacking myelin without shutting down or weakening
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the rest of the immune system.
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A newly published paper from researchers at the University of Zurich offers
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an encouraging step toward that goal.
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The paper shares results from an early-stage clinical trial evaluating a new
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cell-based treatment designed to retrain the immune system so it stops attacking
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myelin while leaving the rest of the immune system intact.
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This experimental treatment works by hijacking the body's natural trash collection system.
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Normally, dying red blood cells
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are filtered out naturally by scavenger cells in the liver and spleen.
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These organs are programmed to clear cell debris quietly without triggering an inflammatory alarm.
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In this treatment, the researchers took a sample of a patient's own red blood
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cells, and they attached seven protein fragments from myelin,
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the exact target that malfunctioning immune cells mistakenly attack in MS.
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When the re-engineered red blood cells were re-infused back into the patient,
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these modified cells traveled to the liver and spleen,
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teaching the immune system to recognize those specific myelin fragments as harmless
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tissue rather than foreign invaders that need to be attacked.
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Now, following the reintroduction of the modified red blood cells,
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Biomarker analysis showed a reduction in serum neurofilament light chain,
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which is a key biomarker of ongoing nerve damage and inflammation in the central nervous system.
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Analyzing individual cells, researchers found that just one infusion quieted
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the damaging immune cells for at least three months.
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At the same time, it boosted helpful peacekeeper immune cells and natural calming
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chemicals that actively protect myelin.
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In short, the therapy taught the immune system to call off the attack on myelin,
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and if myelin isn't being attacked, there is no MS.
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The therapy appears to be well-tolerated in people with relapsing-remitting
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MS, there were no serious adverse events linked to the infusions,
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and clinical and MRI readouts remained stable throughout the trial.
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While this was a small, early-phase study, it provides proof of concept for
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targeted immune tolerance.
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Rather than disarming the entire immune system, precision cell therapies like
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this are designed to re-educate the specific cells driving myelin damage,
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paving the way towards safer, targeted MS therapies.
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And if you'd like to review the details of this study, you'll find that link in today's show notes.
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When we look at treatments for MS, almost everything currently available focuses
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on slowing down the immune system to prevent new damage, and that's certainly
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one half of the equation.
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The other half of the equation, actually repairing the damage that's already
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occurred, remains one of the biggest unmet needs in MS care today.
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Now, a research team in Germany is taking a novel approach toward myelin repair,
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and their project just received a $1.3 million grant from a subsidiary of the
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Elsa Kroner Fresenius Foundation to move their concept, a skin patch designed
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to promote myelin repair
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from the laboratory toward human clinical trials.
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The active ingredient in this patch isn't brand new.
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It's theophylline, an inexpensive medication that doctors have prescribed for
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decades to treat respiratory conditions like asthma.
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In the laboratory, the researchers discovered that low doses of theophylline
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activate a specific natural enzyme in our cells called HDAC2.
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When that enzyme gets turned on, it kickstarts the molecular machinery that
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nerve cells need to rebuild damaged myelin.
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In animal studies, this low-dose approach successfully stimulated myelin repair.
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And you might be wondering why people with MS can't just take an asthma pill,
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which is the way theophylline is dispensed today.
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The catch is dosing.
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In asthma treatment, higher amounts of the drug are needed to open up airways.
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But for nerve repair, the brain needs a steady, continuous, much lower dose.
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Working with pharmaceutical technology experts, the research team designed a
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transdermal patch that slowly releases the exact microdose needed through the skin over several days.
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That way, they avoid the sharp peaks and valleys that come with taking a pill.
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It's important to remember that this treatment is still in its early stages.
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This new funding is designed to scale up pharmaceutical-grade manufacturing
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and fund the very first safety trial in healthy volunteers before it can be
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tested in people living with MS.
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Still, this project represents an exciting trend in neurorepair research.
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By taking a well-understood and already approved medication with a known safety profile,
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and engineering a new way to deliver it directly where and how it's needed,
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researchers may be able to shave several years off the typical drug development
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timeline, bringing us one step closer to therapies that not only stop MS,
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but help reverse the damage it leaves behind.
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Cognitive changes and subtle communication issues are common in multiple sclerosis,
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with research showing that up to 75% of people living with MS experience language-related challenges.
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Now, a newly published study suggests that analyzing everyday speech patterns
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could offer a non-invasive, objective method for predicting future brain tissue loss.
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Researchers in the Czech Republic followed 97 people living with MS and 80 healthy
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controls, to see if automated speech analysis could capture subtle cognitive shifts over time,
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and predict long-term brain atrophy.
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Participants were recorded telling a familiar fairy tale of their choice for
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about 90 seconds at the start of the study, and then again two years later.
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Using automated speech recognition and natural language processing software,
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the researchers evaluated specific linguistic patterns, including vocabulary
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diversity and repetition.
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Compared to healthy controls, people with MS showed measurable declines over
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those two years in vocabulary range, meaning they used a narrower set of words than they used to.
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They also noticed an increase in repeated phrases.
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The research team suggests that these shifts reflect subtle difficulties with
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word retrieval, processing speed, and the brain networks responsible for linking
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words with their meanings.
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The researchers followed up with repeated MRI scans for up to five additional
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years, analyzing over 600 scans,
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and they found that early declines in speech, specifically in narrowing vocabulary
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and higher phrase repetition, were significantly associated with subsequent
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gray matter loss in the brain.
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Looking at specific brain regions, reductions in sentence complexity were linked
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to gray matter lost in the cerebral cortex and changes across multiple speech
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metrics correlated with volume loss in the cerebellum,
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and that's a region that's vital for motor coordination, balance,
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and cognitive processing.
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Now, because all the participants in this study were Czech speakers,
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and MRI scanning protocols shifted somewhat over the study's seven-year period,
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larger studies are needed to confirm whether these same linguistic markers translate
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across other languages and diverse patient populations.
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Even so, these study results suggest a better, more patient-friendly way to monitor MS.
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If you've ever gone through a standard cognitive assessment,
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you know they can be time-consuming, expensive, and stressful.
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In the future, automated, cost-effective digital tools, perhaps even an app
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on a smartphone that analyzes a short voice sample, might help clinicians detect
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neurodegeneration earlier.
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And that would allow for more proactive treatment adjustments without placing
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any extra burden on the patient.
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Now, if you'd like to review the details of this study, you'll find a link in today's show notes.
00:17:45.950 --> 00:17:51.540
And whether it's analyzing speech to determine future neurodegeneration or using
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a skin patch to promote remyelination,
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a lot of what we've been talking about in this episode of the podcast is focused
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not only on new research, but on whole new treatment paradigms.
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The rate of scientific discovery is taking place at speeds that have never been seen before.
00:18:09.230 --> 00:18:12.910
And that makes the upcoming joint meeting of the European Committee for Treatment
00:18:12.910 --> 00:18:16.820
and Research in MS and the America's Committee for Treatment and Research in
00:18:16.820 --> 00:18:22.880
MS, or the Joint ECTRMS-ACTRMS meeting, more important than ever to the MS community.
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And that's why Patient Community Day has become such a necessary part of this meeting.
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If you're curious about what this year's Patient Community Day is all about
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and why you may want to participate either in person or online,
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you're going to be interested in what my guests, Dr.
00:18:39.950 --> 00:18:44.110
Jennifer Graves and Brett Drummond, have to say as they give us a preview of
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what we can expect at ECTREM's Patient Community Day 2026.
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We're less than 40 days away from the joint meeting of the European Committee
00:18:57.160 --> 00:19:01.850
for Treatment and Research in MS and the Americas Committee for Treatment and Research in MS,
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the joint ECTRAMS-ACTRAMS Scientific Congress, known this year as MS Toronto 2026.
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And while the presentations made during this meeting are high-level scientific
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presentations, ECTRAMS Patient Community Day is tailored specifically not for
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scientists and clinicians, but for people affected by MS.
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Joining me to give us a special preview of Patient Community Day 2026 are Dr.
00:19:28.850 --> 00:19:30.700
Jennifer Graves and Brett Drummond.
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Dr. Graves is a professor and vice chair of human research and division head
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of neuroimmunology at the University of California, San Diego.
00:19:39.400 --> 00:19:43.520
And my longtime friend, Brett Drummond, is the host of the ECTRAMS podcast and
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the voice of ECTRAMS Patient Community Day.
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