Afleveringen
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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 what if you and your neurologist don't necessarily agree?
Joining me to talk about your role when it comes to choosing the right DMT through shared decision-making with your neurologist is Dr. Barbara Giesser. Dr. Giesser is an internationally recognized clinician and award-winning educator who has specialized in the care of people with multiple sclerosis since 1982, a full decade before there was even a single disease-modifying therapy available to treat MS.
Dunk MS takes place This Saturday, May 18th on the UCLA campus, at iconic Pauley Pavilion. And if you're in or around Southern California, you won't want to miss this unique event. We're sharing all the details, so don't miss my conversation with Dunk MS founder, Blake Arnet.
Since we're talking about shared decision-making this week, we're sharing details of a study that asked the question, "How much do people living with MS know about MS?"
And if you've found yourself worried about smoldering MS, you'll be pleased to learn that a recent study showed that sophisticated PET imaging is able to identify this hidden, persistent inflammation in MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
350 Episodes! :22
This Week: Finding the right DMT through shared decision-making 1:04
Dunk MS is just days away! My conversation with Blake Arnet 2:31
How much do people living with MS know about MS? 10:57
PET imaging reveals persistent hidden inflammation in MS 15:37
Dr. Barbara Giesser discusses choosing the right disease-modifying therapy through shared decision-making with your neurologist 20:04
Share this episode 33:13
Have you downloaded the free RealTalk MS app? 33:33
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Just copy this link & paste it into your text or email: https://realtalkms.com/350
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Get Your Tickets for Dunk MS
https://dunkms.comSTUDY: A Systematic Review to Explore Patients' MS Knowledge and MS Risk Knowledge
https://link.springer.com/article/10.1007/s10072-024-07541-5
STUDY: Glial Activity Load on PET Reveals Persistent "Smoldering" Inflammation in MS Despite Disease-Modifying Treatment
https://journals.lww.com/nuclearmed/fulltext/2024/06000/glial_activity_load_on_pet_reveals_persistent.1.aspx
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
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https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 350
Guests: Blake Arnet and Dr. Barbara GiesserPrivacy Policy
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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 ago, the International Advisory Committee on Clinical Trials in MS brought together 100 top experts for a 3-day workshop dedicated to exploring how these many and varied changes can impact MS care.
In Part 2 of our coverage, we're taking you back inside this workshop, where you'll hear from some of the top MS researchers and clinicians who participated in this important meeting.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We continue our coverage of the Aging and MS Workshop :22
Dr. Sarah Morrow and Dr. Yinan Zhang discuss survey results which showed what neurologists and other members of the MS care team see as "gaps" in delivering treatment to patients as they age with MS 1:45
Dr. Giuseppe Portillo describes how artificial intelligence can be used to analyze "brain gap" and predict future MS disease progression 13:03
Dr. John Corboy shares results from two studies that focused on discontinuation of disease-modifying therapy for patients over the age of 60 20:31
Kathy Smith talks about the importance of including older people living with MS in clinical research 31:00
Share this episode 42:43
Have you downloaded the free RealTalk MS app? 43:03
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/349
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 348: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 1)
http://www.realtalkms.com/348Join the RealTalk MS Facebook Group
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RealTalk MS Episode 349
Guests: Dr. Sarah Morrow, Dr. Yinan Zhang, Dr. Giuseppe Portillo, Dr. John Corboy, and Kathy SmithPrivacy Policy
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Zijn er afleveringen die ontbreken?
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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 end up with a sum that is exponentially larger than its parts. And when you consider that there are more people living with MS who are over the age of 65 than there are people living with MS under the age of 45, it's not surprising that the subject of aging with MS has become an area of increasing interest among researchers, clinicians, and people affected by MS.
That's why, last week, the International Advisory Committee for Clinical Trials in Multiple Sclerosis invited a select group of 100 MS researchers and clinical specialists from around the world to participate in a three-day deep dive exploring aging and MS.
In Part 1 of our coverage, we're taking you inside this meeting, where you'll hear from some of the expert presenters who were in attendance.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: From the Aging & MS Workshop :22
Dr. Tim Coetzee shares some of the issues the meeting presenters and attendees will be focusing on 1:35
Dr. Jennifer Graves discusses the difference between chronological aging and biological aging, and how that difference impacts MS 9:29
Dr. Wallace Brownless talks about some of the challenges related to diagnosing and treating late-onset MS 14:33
Dr. Amit Bar-Or explains how the immune system changes over time, and how those changes can affect living with MS 21:36
Share this episode 28:04
Have you downloaded the free RealTalk MS app? 28:24
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/348
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 348
Guests: Dr. Tim Coetzee, Dr. Jennifer Graves, Dr. Wallace Brownlee, Dr. Amit Bar-OrPrivacy Policy
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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 Epidemiology, and the Co-Director of the Multiple Sclerosis Precision Medicine Center of Excellence at Johns Hopkins University. Dr. Mowry is also one of the leading experts on Vitamin D and MS in the world.
The National MS Society's virtual MS Activist Rally is happening in just two days, on April 25th! We're sharing registration details.
We'll tell you about a scientific breakthrough that has identified a specific autoantibody signature that can accurately predict MS years before someone experiences any MS symptoms.
We're sharing details of a clinical trial that focused on the efficacy of Ocrevus in treating Black and Hispanic people living with MS. We'll also share the details of this trial's novel design that can serve as a blueprint for successfully engaging members of minority communities in future clinical research.
We'll explain one reason why we aren't hearing as much news about the benefits of using cannabis to treat MS symptoms, and why cannabis use may actually be creating a new set of problems for people living with MS.
And we're sharing study results that show that an artificial intelligence program may have a better bedside manner than your neurologist.
We have a lot to talk about! Are you ready for RealTalk MS??!
Don't miss it! The MS Activist Rally is happening on 4/25! :22
This Week: The relationship between Vitamin D and MS 2:50
Autoantibody signature predicts MS years before symtoms develop 3:45
Clinical trial results show that Black and Hispanic people with MS respond well to Ocrevus 7:58
Is cannabis working for people with MS? 11:13
Study results show that ChatGPT answers questions about MS with more empathy than neurologists 14:28
Dr. Ellen Mowry updates us on what the latest research is revealing about Vitamin D and MS 18:31
Share this episode 32:06
Have you downloaded the free RealTalk MS app? 32:26
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/347
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER for the MS Activist Rally
https://events.zoom.us/ev/Ame2jWSuHmriG94cyQmlWHr45mgnzxkDv8oMZRGsrS3ZxiSj5rro~Anqb3dHg3ewiz4KNHn2Ena4bgli_WXlza_zcygZN3GinnleB6rO15OCzGQ
STUDY: An Autoantibody Signature Predictive of Multiple Sclerosis
https://www.nature.com/articles/s41591-024-02938-3
RealTalk MS Episode 346: Why Members of Minority Communities May Face a More Severe MS Disease Course with Dr. Annette Langer-Gould
https://realtalkms.com/346STUDY: ChatGPT vs Neurologists: A Cross-Sectional Study Investigating Preference, Satisfaction Ratings, and Perceived Empathy in Responses Among People Living with Multiple Sclerosis
https://link.springer.com/article/10.1007/s00415-024-12328-xJoin the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 347
Guest: Dr. Ellen MowryPrivacy Policy
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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-modifying therapies, and their MS progresses more quickly.
It's often been speculated that the reason behind these disparities is based on genetics -- that members of minority communities who are living with MS are genetically predisposed to experiencing a more severe disease course.
My guest in this episode is Dr. Annette Langer-Gould, and Dr. Langer-Gould comes armed with evidence that points to a completely different set of answers for the cause of racial and ethnic disparities in MS disease severity and progression.
We're also sharing registration details for the National MS Society's MS Activist Rally on April 25th!
We'll tell you about an inverse vaccine that prevents the mouse model of MS (and we'll explain what an inverse vaccine is!)
You'll find out where you can find the just-released video progress report from the International Progressive MS Alliance.
We'll explain just-published results from an analysis that shows why anti-diabetic and weight-loss drugs like Ozempic, Jardiance, and Trulicity may be repurposed as MS therapies.
And we're sharing study results with both good news and not so great news when it comes to being diagnosed and treated for MS in a timely manner.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're exploring the reason that members of underserved minority populations who are living with MS often experience a more severe disease course :22
The MS Activist Rally is happening on 4/25! 1:28
An inverse vaccine prevents the mouse model of MS 3:49
The International Progressive MS Alliance has released their 2024 progress report 6:13
Can weight-loss drugs be repurposed as MS therapies? 7:33
A study shows that getting diagnosed and treated for MS is dependent upon your country's healthcare system 10:26
Dr. Annette Langer-Gould has a sobering answer as to why some members of minority communities who are living with MS experience a more severe disease course 14:48
Share this episode 31:31
Have you downloaded the free RealTalk MS app? 31:51
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/346
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER for the MS Activist Rally
https://events.zoom.us/ev/Ame2jWSuHmriG94cyQmlWHr45mgnzxkDv8oMZRGsrS3ZxiSj5rro~Anqb3dHg3ewiz4KNHn2Ena4bgli_WXlza_zcygZN3GinnleB6rO15OCzGQ
VIDEO: International Progressive MS Alliance 2024 Progress Report
https://www.youtube.com/watch?v=4ojRaLp_J1w
STUDY: Exploring the Association Between Weight Loss-Inducing Medications and Multiple Sclerosis: Insights from the FDA Adverse Event Reporting System Database
https://journals.sagepub.com/doi/10.1177/17562864241241383
STUDY: Disease-Modifying Therapy Initiation Patterns in Multiple Sclerosis in Three Large Populations
https://journals.sagepub.com/doi/10.1177/17562864241233044Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 346
Guest: Dr. Annette Langer-GouldPrivacy Policy
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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. Shah is an Associate Professor of Neurology and Associate Clinic Director of Outpatient Neurology at the University of Colorado School of Medicine.
Dr. Voskuhl is the Director of the UCLA Multiple Sclerosis Program, she holds the Jack H. Skirball Chair in MS, she's a Professor in the UCLA Department of Neurology, and Dr. Voskuhl also serves as Faculty Neurologist of the UCLA Comprehensive Menopause Care Program.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're taking a deep dive into women's health and MS :22
Dr. Rhonda Voskuhl named the recipient of the 2024 John Dystel Prize for Multiple Sclerosis Research :52
Dr. Rhonda Voskuhl discusses her research looking at why MS affects men and women differently 2:32
Dr. Anna Shah discusses how MS can affect women's health issues and how those health issues can affect MS 13:21
Share this episode 32:40
Have you downloaded the free RealTalk MS app? 33:00
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/345
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
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https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 345
Guests: Dr. Rhonda Voskuhl and Dr. Anna ShahPrivacy Policy
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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 acceleration of discovery is the technology that allows scientists to analyze massive amounts of information looking for relationships or identifying characteristics that, without this technology, would be impossible to see.
This category of tech is commonly referred to as big data. And we're closer than we've ever been to understanding the biological complexities of multiple sclerosis because we've learned to harness the computing power that allows scientists to discover those very small needles among those very large haystacks.
My guest in this episode is Professor Sergio Baranzini. Professor Baranzini is this year's recipient of the Barancik Prize for Innovation in MS Research and he's someone who has successfully leveraged big data to drive big, game-changing discoveries in multiple sclerosis.
We'll also share some good news about MS research funding from the federal government.
We'll review newly published results from a study that has identified 3 subtypes of MS, each with a different disease trajectory.
We'll share evidence from a study that focused on whether people over the age of 50 with nonactive MS should discontinue their disease-modifying therapy.
And we'll tell you about the Canadian regulatory approval of a software-based medical device that can monitor MS disease activity by tracking eye movement -- all from an iPad that people with MS can use at home.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're saluting Professor Sergio Baranzini, this year's winner of the Barancik Prize :22
Congress provides $20 million in FY2024 funding for the MS Research Program 1:57
A German research team has identified 3 subtypes of MS based on their unique immune cell signature found in a blood sample 4:10
A French research team focused their study on whether people over the age of 50 with nonactive MS should discontinue their DMT. Here's what they discovered 8:58
Health Canada has approved ETNA-MS. A software-based medical device that can monitor MS disease activity by tracking eye movement 12:48
Professor Sergio Baranzini discusses how big data has fundamentally changed scientific research, and how he's using it to find cures for MS 16:44
Share this episode 32:03
Have you downloaded the free RealTalk MS app? 32:24
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/344
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER for the MS Activist Rally
https://events.zoom.us/ev/Ame2jWSuHmriG94cyQmlWHr45mgnzxkDv8oMZRGsrS3ZxiSj5rro~Anqb3dHg3ewiz4KNHn2Ena4bgli_WXlza_zcygZN3GinnleB6rO15OCzGQ
STUDY: Multiple Sclerosis Endophenotypes Identified by High-Dimensional Blood Signatures are Associated with Distinct Disease Trajectories
https://science.org/doi/10.1126/scitranslmed.ade8560
STUDY: High-Efficacy Therapy Discontinuation vs Continuation in Patients 50 Years and Older with Nonactive MS
https://jamanetwork.com/journals/jamaneurology/article-abstract/2816799
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 344
Guest: Professor Sergio BaranziniPrivacy Policy
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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 significance for me. Joining me to talk about what Progressive MS Day is all about is my friend, Kevin Reid. Kevin was diagnosed with MS in 2002 and, for the past 10 years, he's been on a mission to crush MS.
As MS Awareness Month draws to a close, we're sharing a series of short videos featuring conversations I had with MS experts at the ECTRIMS congress. What makes this video series unique is that iConquer MS invited people living with MS to watch these videos. Then, I interviewed them to get their perspective on the topics the experts were discussing. It's the first time you'll not only hear from the experts, but you'll also get the thoughts and reactions of people who are living with MS.
We'll tell you about the neurostimulator that was just designated as a Breakthrough Device for promoting myelin repair.
We'll share the details of a newly announced Phase 2 clinical trial for a T-cell therapy for MS.
You'll hear about the study that identified a biomarker that reliably predicted the likelihood of future disease activity in people with MS.
And we'll tell you where you can catch the video replay of the 2024 ACTRIMS Forum Patient-Centered Webinars.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: March 28th is Progressive MS Day :22
Have you seen the series of short videos featuring my conversations with MS experts at ECTRIMS along with the thoughts and reactions from people living with MS? 1:00
Catch the video replay of the 2024 ACTRIMS Forum Patient-Centered Webinars 1:57
FDA designates neurostimulator as a breakthrough device for promoting myelin repair in people living with relapsing-remitting MS 2:46
Biotech company PolTREG announces Phase 2 clinical trials to test their Tregs treatment for MS 5:28
Study shows neurofilament light chain levels can reliably predict future disease activity 7:10
Kevin Reid discusses the importance of Progressive MS Day and gives us a preview of CRUSH MS 10:35
Share this episode 28:09
Have you downloaded the free RealTalk MS app? 28:29
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/343
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
VIDEO: Dr. Jiwon Oh shares encouraging results from an extension study of Tolebrutinib, an investigational disease-modifying therapy. Then, two people living with MS share their thoughts about clinical trials and a precision medicine approach to treating MS
https://youtu.be/eWoZLF4bZmoVIDEO: Dr. Anthony Feinstein discusses the outcome of the CogEx study, Then, two people living with MS share their thoughts about the impact of this study
https://www.youtube.com/watch?v=UtGtCnNkYOY
VIDEO: Dr. Annette Langer-Gould discusses the impact of other health conditions on people living with MS. Then, two people living with MS share their thoughts and experiences of managing their MS along with additional health conditions
https://www.youtube.com/watch?v=J83jlqMbsZoVIDEO: Dr. Daniel Ontaneda discusses how artificial intelligence will impact MS treatment. Then, two people living with MS share their thoughts on the potential impact of AI on MS treatment and the future patient experience
https://www.youtube.com/watch?v=_fRLW69Xc1A
VIDEO: Dr. Robert Motl discusses the benefits of exercise for people living with MS. Then, two people living with MS share their thoughts on how exercise has impacted their MS journey
https://www.youtube.com/watch?v=oZDdp8JumFgVIDEO: ACTRIMS Forum 2024 Webcast Replays
https://actrims.memberclicks.net/forum-patient-centered-webinarsSTUDY: Prognostic Value of Serum Neurofilament Light Chain for Disease Activity and Worsening in Patients with Relapsing Remitting Multiple Sclerosis: Results from the Phase 3 ASCLEPIOS I and II Trials
https://pubmed.ncbi.nlm.nih.gov/35432382Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 343
Guest: Kevin ReidPrivacy Policy
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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 motivated them to get involved, what their experience as study participants was like, and what the results of the study were for them.
We'll also take you to Capitol Hill as we share conversations that we had during Hill Day at the National MS Society's Public Policy Conference.
It's MS Awareness Month, and we're sharing new videos that feature interviews with leading MS experts along with the thoughts and reactions of people living with MS.
And we'll tell you where you can catch the video replay of the International Progressive MS Alliance's webcast on emerging treatments for progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
Tomorrow! The ACTRIMS Post-Forum Patient-Centered Webinar :22
This Week: The patient perspective on participating in an MS research study 1:38
Live! From the Natinal MS Society's Public Policy Conference 2:28
People with MS weign in on the impact of several ECTRIMS presentations 10:17
Catch the video replay of the International Progressive MS Alliance webcast 11:35
Chiquita Shepard-Knight and Earl Sneed discuss their experience participating in the TEAAMS study 12:11
Share this episode 27:18
Have you downloaded the free RealTalk MS app? 27:38
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Just copy this link & paste it into your text or email: https://realtalkms.com/342
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER: ACTRIMS Post-Forum Patient-Centered Webinar
https://fs2.formsite.com/1FItkk/tgx8tu3xg0/index
VIDEO: Dr. Jiwon Oh shares encouraging results from an extension study of Tolebrutinib, an investigational disease-modifying therapy. Then, two people living with MS share their thoughts about clinical trials and a precision medicine approach to treating MS
https://youtu.be/eWoZLF4bZmoVIDEO: Dr. Anthony Feinstein discusses the outcome of the CogEx study, Then, two people living with MS share their thoughts about the impact of this study
https://www.youtube.com/watch?v=UtGtCnNkYOY
VIDEO: Dr. Annette Langer-Gould discusses the impact of other health conditions on people living with MS. Then, two people living with MS share their thoughts and experiences of managing their MS along with additional health conditions
https://www.youtube.com/watch?v=J83jlqMbsZoVIDEO: Dr. Daniel Ontaneda discusses how artificial intelligence will impact MS treatment. Then, two people living with MS share their thoughts on the potential impact of AI on MS treatment and the future patient experience
https://www.youtube.com/watch?v=_fRLW69Xc1A
VIDEO: Dr. Robert Motl discusses the benefits of exercise for people living with MS. Then, two people living with MS share their thoughts on how exercise has impacted their MS journey
https://www.youtube.com/watch?v=oZDdp8JumFgVIDEO: International Progressive MS Alliance Webcast Replay: Emerging Treatments for Progressive MS
https://www.youtube.com/watch?v=W4hxtl38MBQThe TEAAMS Study
https://projectteaams.ahs.uic.eduJoin the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 342
Guests: Chiquita Shepard-Knight and Earl SneedPrivacy Policy
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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 into strategies for navigating MS-related vision issues while managing and optimizing your vision. Dr. Saidha is a professor of neurology in the Division of Neuroimmunology and Neurological Infections at Johns Hopkins Medicine.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're taking a deep dive into managing MS-related vision issues :22
Doctor Shiv Saidha discusses how to best manage MS-related vision issues 1:17
Share this episode 29:44
Have you downloaded the free RealTalk MS app? 30:05
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/341
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 341
Guest: Dr. Shiv SaidhaPrivacy Policy
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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 life-changing rehabilitation tools for people living with MS.
Dr. Backus is the Vice-President of Research and Innovation at the Shepherd Center. She's a researcher, physical therapist, and educator with more than 30 years of experience in the neurorehabilitation field.
Dr. Willingham is the Director of MS Research at the Shepherd Center. Dr. Willingham's work focuses on the development of innovative technologies and strategies to advance neurorehabilitation.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're taking a deep dive into next-generation tools for MS rehabilitation :22
Doctors Deborah Backus and Brad Willingham discuss innovations in MS rehabilitation 1:44
Share this episode 29:48
Have you downloaded the free RealTalk MS app? 30:08
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/340
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 340
Guest: Dr. Deborah Backus and Dr. Brad WillinghamPrivacy Policy
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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 activity, or PIRA, means and how it may or may not impact your MS journey.
And if you are someone whose MS seems relatively stable and well-managed, you may be wondering whether your central nervous system is under some sort of silent attack from smoldering MS.
Professor Alan Thompson joins me this week to shine a bright light on what, for many, are anxiety-inducing terms and help us understand what they are actually attempting to describe. Professor Thompson is the recipient of virtually every high honor and award that's given in the field of multiple sclerosis research, including the John Dystel Prize for MS Research in 2017, the Sobek Research Prize in 2020, and the 2021 Charcot Award, which recognizes a lifetime of achievement in outstanding research into understanding and treating MS.
We're also sharing results of a study that suggests that kids and teens who are living with MS may experience better outcomes if they are started on a high-efficacy disease-modifying therapy.
We'll tell you about a study that adds to the evidence that autologous hematopoietic stem cell transplantation may be a highly effective treatment that allows some people living with MS to live symptom-free and even return to the workforce.
We're sharing the details of an AI tool that can predict an individual's disease course, while we're talking about survey results that show some strong push-back from the patient community when it comes to using artificial intelligence in the diagnostic process.
And we'll tell you about a study that shows that caffeine may improve balance, mobility, and even quality of life for people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: What is "Progression Independent of Relapse Activity"? 1:31
STUDY: High-efficacy disease-modifying therapies are shown to be effective in treating pediatric onset MS 3:02
STUDY: Compelling evidence for autologous hematopoietic stem cell transplantation (HSCT) as an effective treatment for MS 6:49
An AI tool has been developed that can predict an individual's MS disease course 9:17
SURVEY: Some people have mixed feelings about using AI in diagnosing illness 11:47
STUDY: Caffeine is shown to improve balance and mobility in people with MS 14:38
Professor Alan Thompson helps define a couple of terms that people with MS may find confusing and even worrisome 16:47
Share this episode 28:15
Have you downloaded the free RealTalk MS app? 28:35
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/339
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Highly Effective Therapies as First-Line Treatment for Pediatric-Onset Multiple Sclerosis
https://jamanetwork.com/journals/jamaneurology/fullarticle/2814784
STUDY: Autologous Hematopoietic Stem Cell Transplantation for Multiple Sclerosis: Long-Term Follow-Up Data from Norway
https://journals.sagepub.com/doi/10.1177/13524585241231665STUDY: Predicting Disease Severity in Multiple Sclerosis Using Multimodal Data and Machine Learning
https://link.springer.com/article/10.1007/s00415-023-12132-z
SURVEY: Consumer Perceptions of Second Opinions and Concierge Health Services
https://clinicbyclevelandclinic.com/consumer-perceptions-reportSTUDY: Potential Efficacy of Caffeine Ingestion on Balance and Mobility in Patients with Multiple Sclerosis: Preliminary Evidence from a Single-Arm Pilot Clinical Trial
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0297235
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 339
Guest: Professor Alan ThompsonPrivacy Policy
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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 so critically important.
The National MS Society's Public Policy Conference gets underway on March 4th, and joining me with a preview of this year's conference is the MS Society's Vice-President of Advocacy, Steffany Stern.
We're also taking a deep dive into a paper just published by a group of MS experts detailing the current status of progressive MS research, identifying lessons learned along the way, and calling out the remaining challenges to better understanding MS progression.
We're sharing the details of how and where to register for this week's global webcast being hosted by the International Progressive MS Alliance.
And I'm remembering my wife, Jeanne, on the fourth anniversary of her passing.
We have a lot to talk about! Are you ready for RealTalk MS??!
Jeanne's Story :22
This Week: Inside MS advocacy and this year's Public Policy Conference 8:36
Experts publish an update on progressive MS research, identify lessons learned, and call out the remaining challenges 9:35
The International Progressive MS Alliance hosts a global webcast this Thursday 17:22
MS Society's Vice-President of Advocacy, Steffany Stern, gives us a peek at this year's Public Policy Conference 18:54
Share this episode 31:51
Have you downloaded the free RealTalk MS app? 32:10
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/338
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society: Become an MS Activist
https://nationalmssociety.org/advocacy
PAPER: Clinical Trials for Progressive Multiple Sclerosis: Progress, New Lessons Learned, and Remaining Challenges
https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00027-9/abstract
RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee
https://realtalkms.com/280RealTalk MS Episode 193: Managing the Emotional Fallout of the Pandemic with Dr. Gayle Lewis
https://realtalkms.com/193WEBCAST: New Treatments for Progressive MS: Recent Advances and Promising Research
https://www.msif.org/treatments-webcast/Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 338
Guest: Steffany SternPrivacy Policy
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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 difficult?
Does treating MS make treating that new health condition more difficult?
How can we best offset the social isolation that's often associated with MS and with aging?This week, Dr. Aaron Boster joins me on a deep dive into aging with MS. Dr. Boster brings 19 years of experience as an MS clinician. He's participated in over 65 clinical trials. And, following its FDA approval, Dr. Boster administered the very first dose of Ocrevus in the world. Dr. Boster is well known throughout the MS community for the countless number of short videos and live Q&A sessions he regularly hosts and posts on YouTube.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Aging with MS :22
Dr. Aaron Boster tackles the multifaceted subject of aging with MS 1:59
Share this episode 38:09
Have you downloaded the free RealTalk MS app? 38:32
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/337
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 337
Guest: Dr. Aaron BosterPrivacy Policy
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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 SSDI benefits. Jamie specializes in social security and long-term disability law. And he, literally, wrote the book for the National MS Society on applying for SSDI benefits.
We'll also tell you about the amazing work this year's recipient of the Barancik Prize for Innovation in MS Research is involved in.
We're reporting on the progress that scientists are making in penetrating the blood brain barrier (And we'll remind you about why that makes a real difference for everyone living with MS!)
We're sharing the details about KYV-101, the experimental CAR-T cell therapy that's been given a Fast Track designation by the FDA.
We'll tell you about study results that show people with a university education are more likely to be on a disease-modifying therapy.
And we're sharing study results that identify the inequity in geographic proximity to MS care in the United States.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: How to apply for Social Security Disability Insurance benefits :22
This year's recipient of the Barancik Prize for Innovation in MS research 1:58
Real progress reported in efforts to penetrate the blood brain barrier 7:17
FDA gives Fast-Track designation to CAR-T cell therapy for MS 10:03
STUDY: Having a university education makes it more likely that someone with MS will be on a DMT 13:04
STUDY: Geographic proximity to MS care in the U.S. is far from equal 15:04
Disability law expert Jamie Hall discusses how to apply for SSDI benefits 19:29
Share this episode 38:01
Have you downloaded the free RealTalk MS app? 38:21
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/336
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Applying for Social Security Disability Benefits: A Guidebook for People with MS and their Healthcare Providers
https://nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Guidebook-Social-Security-Disability-for-People-with-MS.pdf
Predictive High-Throughput Platform for Dual Screening of mRNA Lipid Nanoparticle Blood Brain Barrier Transfection and Crossing
https://pubs.acs.org/doi/10.1021/acs.nanolett.3c03509STUDY: University Education Facilitates Uptake of Disease-Modifying Therapies for Multiple Sclerosis: A Community-Based Study Using the UK MS Register
https://journals.sagepub.com/doi/10.1177/13524585231221411
STUDY: Geographic Proximity in Access to Neurologists and Multiple Sclerosis Care in the United States
https://www.neurology.org/doi/10.1212/WNL.0000000000207916
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 336
Guest: Jamie Hall, Esq.Privacy Policy
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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 receives their MS diagnosis, What the conversation with their neurologist is like, what kind of information they receive, and where they might turn to learn more about their diagnosis.
We're also exploring what should be happening at the time of diagnosis and what needs to come next.
Professor Alice Laroni is a neurologist with over 19 years of experience providing clinical care to MS patients and more than 14 years of experience in neuroimmunological research. She is also an Assistant Professor of Neurology at the University of Genova, in Italy.
Rachel Horne is a professional journalist with a focus on medical issues, as well as someone who's living with MS, herself. Rachel is a regular contributor to The MS Blog, and has also contributed to articles published in science journals including The BMJ, Annals of Neurology, and Neurology.
Both Professor Laroni and Ms. Horne are active members of the MS in the 21st Century initiative. MS21 is a Merck, KGaA, Darmstadt, Germany, initiaitve involving healthcare professionals and patient advocates. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
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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 employed, you absolutely need to know and understand your rights in the workplace.
MS Navigator Christina Forster joins me to answer these questions and more as she shines a bright light on your rights in the workplace.
I'll also remind you why I consider the MS Navigator program to be the gold standard when it comes to customized, one-on-one problem solving and support for anyone affected by MS. (And did I mention there's no charge???)
I hear your questions, so we're taking a moment to review what the RealTalk MS show notes are all about, and where to find them.
We're sharing study results that show a wheat-free diet may reduce MS severity (and it's not about the gluten!)
We'll tell you about a call by experts to adopt a new framework for describing Parkinson's Disease (and we'll explain why that's relevant to the MS community)
Scientists have identified 4 variant genes that place an individual taking some common MS disease-modifying therapies at higher risk of contracting PML. There's a test for that, and we'll tell you how to have that genetic testing done at no cost.
We're talking about research that uncovered new details about how cells in the central nervous system communicate with the cells that produce myelin. And we'll tell you why zebrafish are the key to this research.
And we're sharing a change in strategy for treating MS contained in the updated guidelines published by the Spanish Society of Neurology
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Successfully navigating the health insurance maze :22
Why the MS Navigators are the gold standard when it comes to support for people affected by MS :56
Everything you need to know about the RealTalk MS show notes 2:12
STUDY: A wheat-free diet may reduce MS severity 5:28
Experts call for a new framework for describing Parkinson's Disease 8:31
A test to determine who is at high risk for contracting PML is available...at no cost 11:36
STUDY: Researchers identify specific proteins and signals involved in myelin formation in zebrafish 14:08
The Spanish Society of Neurology has updated its guidelines for treating MS 15:42
MS Navigator Christina Forster discusses your rights in the workplace 19:35
Share this episode 30:37
Have you downloaded the free RealTalk MS app? 30:57
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/335
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Contact an MS Navigator
Phone: 1-800-344-4867
Web via chat: https://nationalmssociety.org
Email: [email protected]STUDY: Attenuation of Immune Activation in Patients with Multiple Sclerosis on a Wheat-Reduced Diet: A Pilot Crossover Study
https://journals.sagepub.com/doi/10.1177/17562864231170928Progressive Multifocal Leukoencephalopathy Genetic Risk Variants for Pharmacovigilance of Immunosuppressive Therapies
https://www.researchgate.net/publication/371965313_OPEN_ACCESS_EDITED_BY_Progressive_multifocal_leukoencephalopathy_genetic_risk_variants_for_pharmacovigilance_of_immunosuppressive_therapies
No Cost PML Risk Genetic Test
https://pmlrisktest.orgSTUDY: Synaptic Input and Ca2+ Activity in Zebrafish Oligdodendrocyte Precursor Cells Contribute to Myelin Sheath Formation
https://www.nature.com/articles/s41593-023-01553-8
Consensus Statement of the Spanish Society of Neurology on the Treatment of Multiple Sclerosis and Holistic Patient Management in 2023
https://www.sciencedirect.com/science/article/pii/S2173580824000191Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 335
Guest: Christina ForsterPrivacy Policy
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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 Carla Turechek joins me to share strategies for successfully navigating the health insurance maze with a minimum number of "surprises."
We're also sharing study results that can help you get the most benefit from your everyday physical activity.
We'll introduce you to an early-stage biotech company that just secured funding to develop three novel therapies that will address myelin repair and neuroinflammation.
We'll share study results that show that a high level of a protein in the blood is a reliable predictor of future disability progression among people living with progressive MS.
We're sharing some eye-opening discount prices from the Mark Cuban Cost Plus Drug Company for generics for three different disease-modifying therapies.
And, speaking of generics, we'll explain why you can buy the generic for Tecfidera in the United States today, but it won't be available in Europe until next year, at the earliest.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Successfully navigating the health insurance maze :22
STUDY: The benefit of physical activity lies in step rate and not step count 1:42
Myrobalan Therapeutics secures financing to develop 3 therapies that address myelin repair and neuroinflammation 3:47
STUDY: High levels of a protein in the blood may predict disability progression in people with primary progressive MS 5:41
You'll want to check out the prices of generics for 3 disease-modifying therapies at Mark Cuban's Cost Plus Drug Company 8:50
Generics for Tecfidera have been delayed at least one year in Europe 10:47
MS Navigator and insurance resources specialist Carla Turechek shares strategies for maximizing your health insurance benefits and minimizing your costs 12:03
Share this episode 26:46
Have you downloaded the free RealTalk MS app? 27:07
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/334
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Free-Living Ambulatory Physical Activity and Cognitive Function in Multiple Sclerosis: The Significance of Step Rate vs Step Volume
https://pubmed.ncbi.nlm.nih.gov/38214757
Myrobalan Therapeutics
https://myrotx.comSTUDY: Serum Glial Fibrillary Acidic Protein and Disability Progression in Progressive Multiple Sclerosis
https://onlinelibrary.wiley.com/doi/10.1002/acn3.51969The Mark Cuban Cost Plus Drug Company
https://costplusdrugs.comJoin the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 334
Guest: Carla TurechekPrivacy Policy
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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. Whatever the reason, it doesn't have to be this way.
Dr. Luis Manrique-Trujillo joins me this week to share tips and strategies that will improve the quality of communication between you and every member of your MS care team. Dr. Manrique-Trujillo is a neurologist specializing in neuroimmunology and multiple sclerosis at MedStar Georgetown University Hospital in Washington, D.C.
We're also sharing some fascinating research that traces the gene variants that increase someone's risk of developing MS all the way back to the Bronze Age.
We'll tell you about a small study that may explain how the Epstein-Barr Virus triggers MS.
We'll tell you about a class-action lawsuit that accuses Pharmacy Benefit Managers of illegal collusion and price-fixing. (And we'll explain why this lawsuit could be a huge step toward lowering the cost of your prescription medications)
And we're sharing our plans for RealTalk MS in 2024.
We have a lot to talk about! Are you ready for RealTalk MS??!
My New Year's Resolutions for RealTalk MS :22
This Week: Improving communication between you and your neurologist 4:59
STUDY: Ancient DNA reveals how MS risk genes arose and spread across Europe 5:59
STUDY: EBV-specific T-cells may play a key role in developing MS 9:36
An important class-action lawsuit has been filed against Pharmacy Benefit Mangers 11:18
Dr. Luis Manrique-Trujillo shares strategies for improving communication between you and your neurologist 15:41
Share this episode 34:19
Have you downloaded the free RealTalk MS app? 34:40
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/333
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Elevated Genetic Risk for Multiple Sclerosis Emerged in Steppe Pastoralist Populations
https://www.nature.com/articles/s41586-023-06618-z
STUDY: Expanded T Lymphocytes in the Cerebrospinal Fluid of Multiple Sclerosis Patients are Specific for Epstein-Barr-Virus-Infected B Cells
https://pnas.org/doi/abs/10.1073/pnas.2315857121Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 333
Guest: Dr. Luis Manrique-TrujilloPrivacy Policy
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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 results from a study that show there is absolutely no association between consuming dairy and gluten products and MS disease activity.
We'll tell you about two different studies that suggest that non-pharmaceutical interventions may be effective in lessening MS fatigue.
We're sharing results from a trial that reveal an innovative approach to supporting MS caregivers.
And we'll tell you about 4.6 million euro in new funding from the International Progressive MS Alliance that will go toward research focused on developing new treatments for progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Managing the cost of MS medications :22
STUDY: No association between consuming dairy and gluten products and MS disease activity 1:42
STUDY: SMS-messaging is shown to improve MS-related fatigue 4:50
STUDY: Talk therapy is shown to improve MS-related fatigue 8:36
STUDY: Remote coaching and online information improves the well-being of MS caregivers 10:43
International Progressive MS Alliance announces new research funding 13:32
MS Navigator Robin LaRue discusses how to manage the cost of MS prescription medications 15:57
Share this episode 27:48
Have you downloaded the free RealTalk MS app? 28:09
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/332
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Dairy and Gluten in Disease Activity in Multiple Sclerosis
https://journals.sagepub.com/doi/10.1177/20552173231218107
STUDY: Text Messaging Intervention for Fatigue Self-Management in People with Stroke, Spinal Cord Injury, and Multiple Sclerosis: A Pilot Study
https://sciencedirect.com/science/article/abs/pii/S1936657423001310?via%3DihubSTUDY: Effectiveness of a Blended Booster Programme for the Long-Term Outcome of Cognitive Behavioural Therapy for MS-Related Fatigue: A Randomized Controlled Study
https://journals.sagepub.com/doi/full/10.1177/13524585231213258STUDY: Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals with Multiple Sclerosis: A Randomized Pilot Study Trial
https://meridian.allenpress.com/ijmsc/article/25/6/252/495534/Effect-of-2-Arm-Intervention-on-Emotional-Outcomes
International Progressive MS Alliance
https://progressivemsalliance.orgJoin the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkmsDownload the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200Download the RealTalk MS App for Android Devices
https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalkGive RealTalk MS a rating and review
http://www.realtalkms.com/reviewFollow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 332
Guest: Robin LaRuePrivacy Policy
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