RealTalk MS

Latest Episodes:

Episode 344: Big Data Leads to Big Breakthroughs in MS with Professor Sergio Baranzini Apr 01, 2024

Show notes

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: jon@realtalkms.com Phone: (310) 526-2283

And 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/realtalkms

Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 344 Guest: Professor Sergio Baranzini

Episode 343: Progressive MS Day with Kevin Reid Mar 25, 2024

Show notes

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

Email: jon@realtalkms.com Phone: (310) 526-2283

And 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/eWoZLF4bZmo

VIDEO: 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=J83jlqMbsZo

VIDEO: 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=oZDdp8JumFg

VIDEO: ACTRIMS Forum 2024 Webcast Replays https://actrims.memberclicks.net/forum-patient-centered-webinars

STUDY: 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/35432382

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 343 Guest: Kevin Reid

Episode 342: Behind the Scenes of an MS Research Study with Chiquita Shepard-Knight and Earl Sneed Mar 18, 2024

Show notes

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

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/342

ADD YOUR VOICE TO THE CONVERSATION

Email: jon@realtalkms.com Phone: (310) 526-2283

And 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. 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: International Progressive MS Alliance Webcast Replay: Emerging Treatments for Progressive MS https://www.youtube.com/watch?v=W4hxtl38MBQ

The TEAAMS Study https://projectteaams.ahs.uic.edu

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

Follow 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 Sneed

Episode 341: How MS Can Impact Vision with Dr. Shiv Saidha Mar 11, 2024

Show notes

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

Email: jon@realtalkms.com Phone: (310) 526-2283

And 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/realtalkms

Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 341 Guest: Dr. Shiv Saidha

Episode 340: This Is Not Your Father's MS Rehabilitation with Dr. Deborah Backus and Dr. Brad Willingham Mar 04, 2024

Show notes

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

Email: jon@realtalkms.com Phone: (310) 526-2283

And 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/realtalkms

Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

Follow 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 Willingham

Episode 339: Understanding Progression Independent of Relapse Activity with Professor Alan Thompson Feb 26, 2024

Show notes

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

Email: jon@realtalkms.com Phone: (310) 526-2283

And 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/10.1177/13524585241231665

STUDY: 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-report

STUDY: 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/realtalkms

Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 339 Guest: Professor Alan Thompson

Episode 338: Inside MS Advocacy and This Year's Public Policy Conference with Steffany Stern Feb 19, 2024

Show notes

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

Email: jon@realtalkms.com Phone: (310) 526-2283

And 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/280

RealTalk MS Episode 193: Managing the Emotional Fallout of the Pandemic with Dr. Gayle Lewis https://realtalkms.com/193

WEBCAST: 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/realtalkms

Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 338 Guest: Steffany Stern

Episode 337: Aging With MS with Dr. Aaron Boster Feb 12, 2024

Show notes

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

Email: jon@realtalkms.com Phone: (310) 526-2283

And 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/realtalkms

Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 337 Guest: Dr. Aaron Boster

Episode 336: Applying for Social Security Disability Insurance with Jamie Hall, Esq. Feb 05, 2024

Show notes

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

Email: jon@realtalkms.com Phone: (310) 526-2283

And 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.3c03509

STUDY: 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/realtalkms

Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 336 Guest: Jamie Hall, Esq.

Episode 335: Know Your Employment Rights If You're Living With MS with Christina Forster Jan 29, 2024

Show notes

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

Email: jon@realtalkms.com Phone: (310) 526-2283

And 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: contactusnmss@nmss.org

STUDY: Attenuation of Immune Activation in Patients with Multiple Sclerosis on a Wheat-Reduced Diet: A Pilot Crossover Study https://journals.sagepub.com/doi/10.1177/17562864231170928

Progressive 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.org

STUDY: 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/S2173580824000191

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 335 Guest: Christina Forster