최고 Msresearch 팟캐스트 (2024)

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Episode 374: Grieving When You're Living With MS with Dr. Holly Hendin 37:01

6d ago37:01

37:01

Learning to live with MS is learning to live with loss. For some, those losses may be minor and seem relatively insignificant. For others, those losses can be huge and life-altering. The definition of grief is an emotional response to a significant loss. It's not unusual to grieve over those things in your life that have been lost due to MS. In fac…

1
Episode 373: ECTRIMS Research Roundup Part 2 with Dr. Bruce Bebo 27:45

13d ago27:45

27:45

Now that he's had a chance to digest all of the research presented at ECTRIMS, Dr. Bruce Bebo, the National MS Society's Executive Vice President of Research, is back to share the key research presented at the largest MS research conference in the world. This episode of RealTalk MS is the perfect follow-up to my initial conversation with Bruce, whi…

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Episode 372: Medicare Changes That Will Affect You in 2025 with Sarah Anderson 29:28

20d ago29:28

29:28

Open enrollment is underway! And if you're one of the 25% of people living with MS who get their coverage through Medicare, there are some major changes coming in 2025. So, it's especially important that you review your prescription drug coverage to make sure you're enrolled in the Medicare Part D plan that's best for you. Sarah Anderson, pharmacis…

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Episode 371: A Difference-Making Mobility Device with Dee Ecklund and BE Alink 38:35

27d ago38:35

38:35

In the seven years that I've been hosting RealTalk MS, no one has ever described a mobility device as life-changing. That is until listener Dee Ecklund reached out to tell me about her experience with the Alinker. One of my goals in producing this podcast is to introduce the RealTalk MS listener community to people who are difference-makers. And De…

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ECTRIMS Extra: Results from the Tolebrutinib Phase 3 Clinical Trial for Relapsing MS with Dr. Jiwon Oh 8:06

1M ago8:06

8:06

With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conver…

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Episode 370: Understanding the Updated Pathways to Cures Research Roadmap with Dr. Bruce Bebo and Shawna Golden 31:34

1M ago31:34

31:34

In 2020, the National MS Society convened the Pathways to Cures Think Tank. I shared news and interviews from what I considered a historic meeting back in Episode 125 of RealTalk MS. The information shared and the work generated by that Think Tank led to the Pathways to Cures Global Summit in 2023. In Episodes 297and 298 of RealTalk MS, I shared ne…

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ECTRIMS Extra: Revisions to the Way MS is Diagnosed with Dr. Peter Calabresi 9:04

1M ago9:04

9:04

With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conver…

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ECTRIMS Extra: Rachel Horne and Professor Kerstin Helwig 11:48

1M ago11:48

11:48

With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conver…

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Episode 369: ECTRIMS 2024 with Kristine Werner Ozug and Dr. Bruce Bebo 30:32

1M ago30:32

30:32

ECTRIMS 2024, the largest MS research conference in the world concluded last week, and in this week's episode, we'll be hearing two slightly different perspectives on which news, announcements, and presentations stood out at this year's meeting. The ECTRIMS conference can feel almost overwhelming. You find yourself among 9 or 10 thousand other atte…

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ECTRIMS EXTRA: New Course Descriptors for MS with Dr. Fred Lublin 7:26

1M ago7:26

7:26

With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conver…

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Episode 368: Living a More Purposeful Life with MS with Dr. Evan Smith 34:50

2M ago34:50

34:50

Living with the unpredictability of MS sometimes feels like riding a rollercoaster. As you experience the twists and turns of life with MS, you can sometimes feel unmoored from the person you thought you were. You can sense your priorities, motivations, and values shifting. And, in those moments, it becomes easy to lose your sense of purpose. Clini…

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Episode 367: Budgeting for Living with MS with Bruce McClary 34:46

2M ago34:46

34:46

Living with MS is expensive. A recent study funded by the National MS Society found the average cost of living with MS in the United States is $88,487 a year. Even with insurance, that can turn out to be a heavy lift. One thing you don't need is to be worrying about money while you're already worrying about MS. So, when I think about discussing bud…

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Episode 366: Medicare and MS -- Getting Your Ducks In a Row with Laquel Thomas 35:13

2M ago35:13

35:13

Most of us know Medicare as health insurance for Americans who are 65 or older, but when they qualify for Social Security disability benefits, people younger than 65 automatically qualify for Medicare. Today, between 25 and 30% of the people living with MS are Medicare beneficiaries. Whether you already have Medicare or you'll be signing up for Med…

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Episode 365: It's the Episode Where I Get Interviewed with Jon Strum 41:35

2M ago41:35

41:35

If you're a regular listener, you know that I rely on the RealTalk MS listener community to let me know which topics you'd like to hear about on this podcast. A few years ago, in episode 264, listener Dawnia Baynes did a podcast takeover, and interviewed me. Since then, I've heard from a bunch of you who, for some reason, want to hear more about me…

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Episode 364: Understanding the Signs and Symptoms of MS with Dr. Leorah Freeman 30:09

3M ago30:09

30:09

Getting an MS diagnosis is not always the quick, straightforward process we'd like it to be. For some people, the process can drag on for years. But getting that diagnosis only happens when you and your primary care physician recognize that something's going on. It might be a sudden vision issue. Maybe it's unexplained tingling in an arm or leg. Or…

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Episode 363: Safe Driving When You're Living with MS with Jenny Nordine, OTL, CDRS 32:57

3M ago32:57

32:57

For some people, getting in their car and heading for, well, anywhere represents freedom and independence. For others, it's a way to get to their jobs, get to their medical appointments, get the kids to school, and run necessary errands. MS can change all of that. Occupational Therapist and Certified Driver Rehabilitation Specialist Jenny Nordine j…

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Episode 362: The Role of Integrative Medicine in Treating MS with Dr. Lynne Shinto 29:33

3M ago29:33

29:33

Integrative medicine brings conventional and complementary treatments together in a coordinated way. This approach to health and wellness represents a growing trend across the United States, especially among people who live with a chronic disease like MS. Dr. Lynne Shinto joins me to explain what integrative medicine is and how to safely incorporat…

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Episode 361: Meet the new President and CEO of the National MS Society with Dr. Tim Coetzee 30:23

3M ago30:23

30:23

Less than two weeks ago, the National MS Society announced the appointment of Dr. Tim Coetzee as its new President and CEO. The MS Society's board chair, Peter Porrino, commented, "Tim is a trusted voice of the global MS community, a highly respected scientist, and we are excited for him to bring his transformative leadership to drive us into our n…

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Episode 360: How Digital Technology Is Changing the Diagnosis and Treatment of MS with Dr. Riley Bove 30:44

3M ago30:44

30:44

It's hard to imagine any area of our lives that hasn't been transformed by digital technology. That's certainly true for healthcare in general and MS diagnosis and treatment in particular. Dr. Riley Bove joins me to discuss the role that digital technology already plays in the diagnosis and treatment of MS and to share a preview of what's coming ne…

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Episode 359: The Unraveling with Dr. Nara Michaelson 31:06

4M ago31:06

31:06

As Harvard Fellow Dr. Nara Michaelson treated women who had been recently diagnosed with MS, she recognized they shared characteristics that she had observed in victims of violent domestic abuse. Dr. Michaelson's observation led her to write The Unraveling, an essay that highlights the fear that can accompany the uncertainty of living with MS. Dr. …

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Episode 358: VISIBL-MS with Dr. Jaime Imitola 33:06

4M ago33:06

33:06

The inequities associated with gaining access to quality healthcare are often discussed, and my guest this week has taken steps to address them. Dr. Jaime Imitola and his team at UCONN Health have created a tool called VISIBL-MS, a bilingual framework designed to increase doctors' and patients' awareness of the early signs of MS. We'll also share t…

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Episode 357: Living Your Best Life When You're Living with MS with Dr. Lisa Doggett 28:51

4M ago28:51

28:51

When it comes to living your best life when you're living with MS, the first step is to make smart lifestyle choices. Maintaining a healthy lifestyle doesn't require pills, injections, or infusions. And making smart lifestyle choices can make a real, measurable difference in your quality of life. Joining me to talk about the benefits of maintaining…

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Episode 356: A Final Conversation with National MS Society President and CEO, Cyndi Zagieboylo 33:04

4M ago33:04

33:04

Over the course of her 39-year career with the National MS Society, including the past 13 years as its President and CEO, Cyndi Zagieboylo has been a driving force behind major initiatives that have fundamentally changed the MS treatment and research landscape. Creating a world where cures for MS are now within reach, Cyndi has led the work to make…

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Episode 355: The NARCOMS Patient Registry with Dr. Robert Fox 28:29

5M ago28:29

28:29

Research is the engine that drives the future. And participating in MS research is not only vital to improving scientists' understanding of multiple sclerosis, it's also empowering. And the really good news is that you can participate in MS research from the comfort of your own home. My guest this week is the Managing Director of the North American…

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Episode 354: From the Consortium of MS Centers 38th Annual Meeting -- Part 2 40:05

5M ago40:05

40:05

Two weeks ago, thousands of clinicians, nurses, physician's assistants, rehabilitation experts, and others traveled to Nashville to attend the Consortium of Multiple Sclerosis Centers 38th Annual Meeting. This is Part 2 of our coverage from that meeting. In this episode, we're sharing our conversations with some of the experts who were at the meeti…

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Episode 353: From the Consortium of MS Centers Annual Meeting with Dr. Kathy Zackowski and Dr. Stephen Krieger 35:42

5M ago35:42

35:42

Last week, thousands of clinicians, nurses, physician's assistants, rehabilitation experts, and others traveled to Nashville to attend the Consortium of Multiple Sclerosis Centers 38th Annual Meeting. Welcome to Part 1 of our coverage from that meeting. In this episode, I'm talking with Dr. Kathy Zackowski, Associate Vice-President for Research at …

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Episode 352: World MS Day with Rachel Horne 28:23

5M ago28:23

28:23

May 30th is World MS Day, and we're taking this opportunity to look at some of the challenges faced by people with MS around the world. Global economics and the peculiarities of different healthcare systems make fundamental issues like access to quality healthcare and affordable MS medications difficult for many and impossible for some. U.K. journa…

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Episode 351: Managing Stress When You're Living with MS with Dr. Grace Tworek 29:01

6M ago29:01

29:01

We've reached a moment in time when it seems impossible to avoid at least some level of stress in our lives. We also know that stress has been shown to make MS symptoms worse and even trigger relapses. We can't eliminate all the stress in our lives, so learning how to manage and minimize stress is an important part of living well with MS. This week…

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Episode 350: Choosing Your MS Disease-Modifying Therapy with Dr. Barbara Giesser 34:45

6M ago34:45

34:45

There are more than 20 disease-modifying therapies available to treat MS today. Some are considered high-efficacy, some are considered moderately effective, and each has its own risk profile and side effects to consider. So, how do you choose? How much homework should someone living with MS do? Where should you look for reliable information? And wh…

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Episode 349: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 2) 44:15

6M ago44:15

44:15

As we age, our bodies undergo biological changes. Our immune system changes. Our brain changes with age. Our cognitive abilities change, as do our physical abilities. These changes impact everyone. But these biological processes may impact people with MS differently. And MS may impact these biological processes differently. Just a couple of weeks a…

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Episode 348: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 1) 29:34

6M ago29:34

29:34

As people age, their immune systems change. Their level of physical and cognitive reserve changes. They often develop additional health issues. They frequently experience changes in their mobility. And these are people who aren't living with MS. When you combine the health issues related to aging with the health issues that are related to MS, you e…

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Episode 347: Vitamin D and MS with Dr. Ellen Mowry 33:38

6M ago33:38

33:38

Lower levels of Vitamin D have been associated with a higher risk of developing MS and an increase in MS disease activity. And, for years, scientists have worked to better understand the relationship between Vitamin D and MS. Joining me to talk about the role that Vitamin D plays in MS is Dr. Ellen Mowry. Dr. Mowry is a Professor of Neurology and E…

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Episode 346: Why Members of Minority Communities May Face A More Severe MS Disease Course with Dr. Annette Langer-Gould 33:04

7M ago33:04

33:04

In past episodes of this podcast, we've discussed disparities in healthcare. We've looked at evidence that shows members of historically underserved communities who are living with MS can face a more severe disease course. We've looked at studies that have shown some members of these racial and ethnic minority groups don't do as well on disease-mod…

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Episode 345: A Deep Dive into Women's Health and MS with Dr. Rhonda Voskuhl and Dr. Anna Shah 34:11

7M ago34:11

34:11

MS affects women almost 3 times more frequently than it affects men, which makes understanding how MS may impact other women's health issues a priority. Dr. Rhonda Voskuhl and Dr. Anna Shah join me as we take a deep dive into both the research and clinical side of how MS affects women's health and how those other health issues may affect MS. Dr. Sh…

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Episode 344: Big Data Leads to Big Breakthroughs in MS with Professor Sergio Baranzini 33:42

7M ago33:42

33:42

If you're a regular listener, you've probably heard me say that the pace of scientific discovery is moving faster than ever before. Or you may have heard the National MS Society remind us that we've seen as many advances in MS research in the past 5 years as we have in the previous 70 years. Have you ever wondered why? A major driver of this accele…

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Episode 343: Progressive MS Day with Kevin Reid 29:41

7M ago29:41

29:41

March 28th is Progressive MS Day, a day that offers an opportunity for people affected by MS, patient advocates, healthcare providers, governments, and industry to share stories online and show their support for people living with progressive forms of MS. My wife, Jeanne, lived with progressive MS for 23 years, so this day holds a special significa…

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Episode 342: Behind the Scenes of an MS Research Study with Chiquita Shepard-Knight and Earl Sneed 28:50

8M ago28:50

28:50

We often discuss the results of MS research studies on this podcast. In order to get to those results, people living with MS have to step up and volunteer to participate. This week, you'll meet Chiquita Shepard-Knight and Earl Sneed, two participants in the TEAAMS study. Chiquita and Earl will discuss how they discovered the TEAAMS study, what moti…

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Episode 341: How MS Can Impact Vision with Dr. Shiv Saidha 31:17

8M ago31:17

31:17

Vision impairment is a key symptom of multiple sclerosis. In fact, many people experience optic neuritis as the very first sign of MS. People living with MS may also experience other vision-related issues including internuclear ophthalmoplegia, diplopia, nystagmus, oscillopsia, and reading fatigue. Dr. Shiv Saidha joins me as we take a deep dive in…

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Episode 340: This Is Not Your Father's MS Rehabilitation with Dr. Deborah Backus and Dr. Brad Willingham 31:18

8M ago31:18

31:18

When people living with MS think about rehabilitation, they often think of physical therapy. And, while physical therapy is an important part of MS rehabilitation, our conversation today goes far beyond physical therapy. Doctors Deborah Backus and Brad Willingham, from the Shepherd Center, join me as we take a deep dive into next-level potentially …

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Episode 339: Understanding Progression Independent of Relapse Activity with Professor Alan Thompson 29:47

8M ago29:47

29:47

A couple of terms have found their way into the MS lexicon and they have left some people living with MS feeling confused and even frightened. If you've been diagnosed with relapsing-remitting MS and you've always assumed that disease progression only occurs at the time of a relapse, you may be wondering what progression independent of relapse acti…

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Episode 338: Inside MS Advocacy and This Year's Public Policy Conference with Steffany Stern 33:21

9M ago33:21

33:21

You've probably heard me say more than once that the things people affected by MS want most -- access to quality healthcare, affordable prescription medications, and funding for MS research -- are, to a large extent, all functions of public policy. The people who decide whether we get these things are our elected officials. That's why advocacy is s…

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Episode 337: Aging With MS with Dr. Aaron Boster 39:44

9M ago39:44

39:44

We're all living longer and that includes people living with MS. And as they age, people with MS are asking new questions. Is there a need to stay on disease-modifying therapy after the age of 60? How do we know whether a new symptom is a symptom of MS or a symptom of aging? Does an additional age-related health condition make treating MS more diff…

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Episode 336: Applying for Social Security Disability Insurance with Jamie Hall, Esq. 39:32

9M ago39:32

39:32

When people living with MS find themselves unable to continue working due to disability, they turn to Social Security Disability Insurance (SSDI). And when they do, many are surprised to find the long, winding, sometimes confusing road that lies ahead. This week, disability law expert Jamie Hall joins me to demystify the process of applying for SSD…

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Bonus Episode: MS21: Are We Meeting the Needs of Individuals at the Time of Their MS Diagnosis with Prof. Alice Laroni and Rachel Horne 24:51

9M ago24:51

24:51

This special episode of RealTalk MS is sponsored by EMD Serono and is only intended for a U.S. audience. EMD Serono is the healthcare business of Merck, KGaA, Darmstadt, Germany, in the United States and Canada. In this special episode of RealTalk MS, Professor Alice Laroni and Rachel Horne join me to explore what happens at the time someone receiv…

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Episode 335: Know Your Employment Rights If You're Living With MS with Christina Forster 32:08

9M ago32:08

32:08

How, and to whom, should you disclose your MS at your job? And if you decide to disclose, is that information confidential? What does reasonable accommodation mean? If you need a day or two to bounce back after an infusion, is that part of your PTO? And what do you do when you no longer have days off available? If you're living with MS and you're e…

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Episode 334: Managing Health Insurance When You're Living With MS with Carla Turechek 28:17

10M ago28:17

28:17

Living well with MS means learning to plan ahead. And, while planning ahead may not solve every issue that crosses your path, taking time to understand some of the details and making the right choices when it comes to your health insurance can make a huge difference in your MS care and treatment. MS Navigator and insurance resources specialist Carl…

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Episode 333: Improving Communication Between You and Your Neurologist with Dr. Luis Manrique-Trujillo 35:53

10M ago35:53

35:53

You've just had your appointment with your neurologist or MS Specialist and you're on your way home, feeling like you weren't heard. Maybe there wasn't sufficient time. Or it might feel like your opinion simply isn't valued. Your frustration could even be the result of language issues and cultural barriers that make communication difficult. Whateve…

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Episode 332: Managing the Cost of Generic, Biosimilar, and Other Prescription Medications with Robin LaRue 29:21

10M ago29:21

29:21

If you remember your Economics 101 class, the introduction of generic and biosimilar drugs should cause prices to drop. Yet, when it comes to MS disease-modifying therapies that isn't always the case. MS Navigator Robin LaRue joins me this week to discuss how to manage the sometimes crazy costs of MS prescription medications. We're also sharing res…

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Episode 331: Becoming a Donor to the National MS Brain Bank with Dr. Claire Riley 30:14

10M ago30:14

30:14

This is the week that a lot of us make resolutions for the coming year. And I'm hoping that after you hear my conversation with Dr. Claire Riley, many of you will resolve to become donors to the National Multiple Sclerosis Brain Bank. Resolving to donate brain and tissue to the National MS Brain Bank is a new year's resolution that goes far beyond …

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Episode 330: Revisiting How the Proposed Framework for Researching, Diagnosing, and Treating MS Will Affect You with Prof. Tanja Kuhlmann and Dr. Tim Coetzee 37:57

10M ago37:57

37:57

This week, I'm revisiting the proposal from the International Advisory Committee on Clinical Trials in MS that recommended adopting a new framework that leverages what scientists are continuing to learn about MS and redefines how we talk about MS, how we research MS, how we diagnose MS, and how we treat MS. This proposed framework holds the promise…

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