RealTalk MS

Greetings from Day 1 at ECTRIMS in Berlin! Today, we're talking about pharmaceutical company Novartis seeking approval from the U.S. Food & Drug Administration and the European Medicines Agency for siponimod, a once-daily oral medication that significantly reduces disability progression for people living with secondary progressive MS.

This is important news, as 80% of the people living with relapsing remitting MS are eventually diagnosed with secondary progressive MS. And currently, there is no approved disease modifying therapy for secondary progressive MS. The FDA has fast-tracked the approval process, and siponimod could gain the necessary regulatory approval in the U.S. by March, 2019, and in Europe by the end of 2019. The day at ECTRIMS started with a "Welcome" session. Imagine a room that has seating for thousands of people, a stage that must have been 30 yards wide, and not one -- not two -- but SIX jumbo screens set up so that everyone in the room could see. And even with that enormous capacity, there were people standing in the aisles to be a part of the initial session. The "Welcome" session featured a short address by the Chair of the ECTRIMS 2018 conference, Professor Reinhard Hohfeld. After the session ended, Professor Hohfeld and I snuck out to the hallway for a quick conversation. You'll hear my exclusive conversation with ECTRIMS Chair Professor Reinhard Hohfeld in today's podcast episode. Be sure to download the special ECTRIMS episodes of RealTalk MS tomorrow and Friday, as well! We have a lot to talk about!! ___________

LINKSIf your podcast app doesn't show these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Novartis files for FDA & EMA Approval of Siponimod

ECTRIMS 2018

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RealTalk MS Episode 57 Hosted By: Jon Strum Guest: Professor Reinhard Hohfeld

Tags: MS, MultipleSclerosis, ECTRIMS2018, Siponimod, RealTalkMS

This week, the European Committee for Treatment and Research in Multiple Sclerosis is hosting the ECTRIMS 2018 Congress in Berlin, Germany. It's the largest MS conference in the world. And you can look forward to special episodes of RealTalk MS direct from ECTRIMS, on Wednesday, Thursday, and Friday, October 10th, 11th, and 12th! You'll get the news, hear the interviews, and you'll be the first to get the research updates and announcements as they're being made at the largest MS conference in the world. And if you have the RealTalk MS app (available free at the Apple App Store and the Google Play Store), you'll have access to exclusive bonus content from ECTRIMS that will only be available in the app. (HINT: The ECTRIMS bonus content starts with this episode!)

#ECTRIMS2018 gets underway tomorrow. Today, we're talking about the first-of-its-kind patient-focused drug development collaboration between the Accelerated Cure Project for MS and EMD Serono. We'll tell you about the $12 million dollar commitment that the National MS Society just made to support 40 different MS research projects. We'll let you know where to download the new assistive technology app that Google just released that enables you to operate your Android phone (and all the apps!) completely hands-free. And we'll tell you how and why you want to let your Senator know to vote YES on Senate Joint Resolution 63.

We have a lot to talk about! Are you ready for RealTalk MS?

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RealTalk MS Will Be in Berlin All Week for ECTRIMS 2018 :18

Download the RealTalk MS App & Access Exclusive Bonus Content from ECTRIMS 2:33

Accelerated Cure Project & EMD Serono Announce First-of-its-kind Drug Development Collaboration 3:23

MS Society Commits $12 Million to Fund 40 MS Research Projects 5:53

Study: Which MS Symptoms Are Most Common & Which Are Most Treated? 7:14

Google Releases Google Voice Access 8:34

Take Action: Why You Want to Tell Your Senator to Vote YES on Senate Joint Resolution 63 10:39

Special RealTalk MS Episodes from ECTRIMS This Week 15:29

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

ECTRIMS 2018

iConquer MS

MS Society Commits $12 Million to Fund 40 MS Research Projects

Symptomatology and Symptomatic Treatment in Multiple Sclerosis: Results from a Nationwide MS Registry

Download Google Voice Access

Senate Joint Resolution 63

U.S. Capitol Switchboard -- (202) 224-3121

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RealTalk MS Episode 56 Hosted By: Jon Strum

Tags: MS, MultipleSclerosis, MSSociety, ECTRIMS2018, MSActivist, RealTalkMS

A lot of people visit the RealTalk MS website to listen to each podcast episode. I wanted to make that easier to do, so last week I released the RealTalk MS app for iOS or Android smartphones and tablets. The app will always have the latest episode of RealTalk MS cued up and ready for you to listen to, and it also lets me share all kinds of bonus content with you. Head to the Apple App Store to download the iOS version of the app, or the Google Play Store to download the Android version of the app. It's the best way to stay connected to the podcast! And speaking of staying connected to the podcast, next week, the European Committee for Treatment and Research in Multiple Sclerosis is hosting the ECTRIMS 2018 Congress in Berlin, Germany. It's the largest MS conference in the world. I'll be there, and you can look forward to special episodes of RealTalk MS, next Wednesday, Thursday, and Friday, October 10th, 11th, and 12th! You'll get the news, hear the interviews, and you'll be the first to get the research updates and announcements as they're being made at the largest MS conference in the world. And if you have the RealTalk MS app, you might even find some exclusive content from ECTRIMS that will only be available in the app. So next week, connect with the RealTalk MS podcast, and I'll do my best to connect you to ECTRIMS 2018.

My guest on this week's podcast is Victoria Reese, the founder of the We Are Illmatic campaign. Earlier this year, I had an opportunity to talk with Victoria about the concept of inclusion in the MS community, and how the We Are Illmatic campaign is out to change the face of MS.

We're also talking about a research review that reminds us how very bad smoking is for people living with MS, and the results of a 10-year study in the UK about the cost-effectiveness and clinical effectiveness of 4 MS disease modifying therapies. We'll give you the details behind the congressional funding for the National Neurological Conditions Surveillance System in the U.S. And if you're African-American and living with MS, we'll tell you about how you can participate in an MS genetics study being conducted by UCSF.

We have a lot to talk about! Are you ready for RealTalk MS?

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Download the RealTalk MS App! 1:26

RealTalk MS Will Be in Berlin for ECTRIMS 2018 2:27

MS Society UK Publishes Research Review on Smoking & MS 4:10

10-Year Study in UK Shows MS DMT Effective for RRMS 6:25

U.S. Congress Funds National Neurological Surveillance System 9:18

UCSF Recruiting African-Americans for MS Genetic Study 13:09

Interview with Victoria Reese 16:56

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Link Between Smoking & MS Clearer Than Ever

[email protected] (For questions about smoking & MS)

Assessing the Long-Term Effectiveness of Interferon-beta and Glatiramer Acetate in Multiple Sclerosis: Final 10-Year Results from the UK Multiple Sclerosis Risk-Sharing Scheme

Patient Groups Applaud Spending Bill That Funds Important Neuro Data System

UCSF African-American MS Genetic Study Intake Survey

[email protected] (For questions about UCSF African-American MS Genetic Study)

We Are Illmatic

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RealTalk MS Episode 55 Hosted By: Jon Strum Guests: Victoria Reese

Tags: MS, MultipleSclerosis, weareillmatic, ECTRIMS2018, MSSocietyUK, MSActivist, UCSF, RealTalkMS

The RealTalk MS podcast is celebrating its one-year anniversary this week! And to kick off our 2nd year, I'm launching the RealTalk MS app! You can download the iOS version of the app from the Apple App Store, and you can download the Android version from the Google Play Store. The app is free, and it's the very best (and easiest!) way for you to connect to the podcast. And the RealTalk MS app will allow me to share free bonus content with you. So in the weeks and months ahead, I'll be sharing video content, written content...the app give us more ways to connect over meaningful content that I think you'll want to know about.

My guest on this week's podcast is Dr. Aaron Boster, the system Medical Chief for Neuroimmunology at OhioHealth, and we're going to be talking about a really exciting wellness initiative that OhioHealth is undertaking for people living with MS and other neurological conditions. We'll also be discussing how and why OhioHealth finds itself leading the rest of the world when it comes to innovative treatment initiatives for people living with MS.

We're also talking about the Phase 3 clinical trial that's getting underway to study the effect of simvastatin on people with secondary progressive MS, a 4-year research study on a new method for treating cognitive dysfunction in people with progressive MS, and we'll look at the surprising results of a survey about quality of life and well-being among people living with MS.

We have a lot to talk about! Are you ready for RealTalk MS?

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Announcing the RealTalk MS App! 1:21

Elizabeth Jameson's NY Times Op-Ed 3:49

Simvastatin Phase 3 Clinical Trial Underway in the UK 4:33

Grant Awarded to Research Cognitive Dysfunction in MS 6:22

Well-Being Differs with Age in MS 9:12

Interview with Dr. Aaron Boster 11:28

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

OhioHealth To Open Neuroscience Wellness Center

Dr. Aaron Boster YouTube Channel

Losing Touch, Finding Intimacy (Elizabeth Jameson NY Times Op-Ed)

Register for MS-STAT2 (Simvastatin) Phase 3 Clinical Trial in the UK

The Kessler Foundation

Subjective Well-Being Differs With Age in Multiple Sclerosis: A Brief Report

Give RealTalk MS a Rating & Review

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RealTalk MS Episode 54 Hosted By: Jon Strum Guests: Dr. Aaron Boster

Tags: MS, MultipleSclerosis, OhioHealth, OhioHealthMS, KesslerFoundation, RealTalkMS

I spent this past weekend attending the iConquer MS Leadership Summit in Boston. iConquer MS is a people-powered research network created by the Accelerated Cure Project for MS. Instead of just asking people with MS to provide data, iConquer MS is driven by people living with MS, and it represents a new paradigm of building collaborative partnerships to solve big healthcare questions.

This past spring, I had an in-depth conversation with Dr. Robert McBurney, CEO of the Accelerated Cure Project for MS, and David Gwynne, who heads up their Alliances & Collaborations. We'll revisit that conversation, and I'll also give you my thoughts on the remarkable iConquer MS Leadership Summit.

We're also talking about the shocking decision in the UK to withhold Ocrevus as a treatment for Primary Progressive MS, the MS In America 2017 survey results, and I'll tell you about a couple of excellent webinars that you should be sure to check out.

We have a lot to talk about! Are you ready for RealTalk MS?

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NICE Rejects Ocrevus for PPMS in the UK 1:06

MS In America Survey Results Provide Surprising Insights 4:20

Upcoming Webinars from Can-Do MS 7:40

iConquer MS Leadership Summit 9:49

Interview with Dr. Robert McBurney & David Gwynne 13:09

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

Petition to Make Ocrevus Available for People with PPMS in the UK

Relapse Prevalence, Symptoms, and Health Care Engagement: Patient Insights from the Multiple Sclerosis in America 2017 Survey

Can-Do MS Webinar Series

iConquer MS

Accelerated Cure Project for MS

Give RealTalk MS a Rating & Review

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RealTalk MS Episode 53 Hosted By: Jon Strum Guests: Dr. Robert McBurney & David Gwynne

Tags: MS, MultipleSclerosis, Ocrevus, iConquerMS, CanDoMS, RealTalkMS

My guest on the podcast is Mitch Sturgeon. Mitch is an award-winning blogger, and with the publication of his book, Enjoying the Ride: Two Generations of Tragedy and Triumph, Mitch is a published author, as well. In 2001, Mitch was diagnosed with Primary Progressive MS. He was 35 years old at the time, and that was the same age that Mitch's mother was when she took a fall that left her a quadriplegic. Mitch's book is more than just a reflection of his MS journey. It's a story about a family with all of the quirks, idiosyncrasies, strengths, and faults that any family might have...and how they lived through and even prospered, in the face of tragic circumstances.

We're also talking about what it means to transition from caregiver to advocate. We'll talk about the concept of cognitive reserve and its relationship to MS disability and depression. And we'll share the latest statistical evidence that makes the case for identifying a reliable biomarker for MS disease progression.

We have a lot to talk about! Are you ready for RealTalk MS?

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Transitioning from Caregiver to Advocate 1:11

Cognitive Reserve, Disability & MS Depression 10:21

Neurofilament Light Chain As a Reliable Biomarker for MS Disease Activity 13:09

Interview with Mitch Sturgeon 16:17

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

Cognitive Reserve Attenuates the Effect of Disability on Depression in Multiple Sclerosis

Neurofilament Light Chain as a Biological Marker for Multiple Sclerosis: A Meta-Analysis Study

Enjoying the Ride: Two Generations of Tragedy and Triumph (Book)

Enjoying the Ride (Blog)

Give RealTalk MS a Rating & Review

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RealTalk MS Episode 52 Hosted By: Jon Strum Guest: Mitch Sturgeon

Tags: MS, MultipleSclerosis, MSResearch, Caregiving, CognitiveReserve, NeruofilamentLight, Enjoying_Ride, RealTalkMS

MS Research Australia has published a report titled, Health Economic Impact of Multiple Sclerosis in Australia 2017. The report provides a detailed snapshot of the economics behind MS, looking at employment, quality of life issues, and even calculating the cost per person living with MS in Australia. The report concludes with some powerful recommendations for future steps. My guest is Dr. Lisa Melton, Head of Research at MS Research Australia, and we're talking about what this report is telling us, what it's recommending, and how we transition those recommendations into actionable steps.

We're also talking about some good news for people living with progressive MS -- the extremely positive outcome of the Phase 2 clinical trial for Ibudilast. We'll tell you about a couple of upcoming educational webinars about Ocrevus and primary progressive MS, and Ocrevus and relapsing remitting MS. We'll update you on the latest news about Phase 2 clinical trials for cannabis-based medications to treat MS, you'll get a heads-up about a very sneaky (and very dangerous) piece of legislation that is potentially devastating to people living with MS in the U.S., and we'll tell you how you can catch an online video of last week's Progress in MS Research: Live Update 2018 presentation in Australia.

We have a lot to talk about! Are you ready for RealTalk MS?

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Ibudilast Clinical Trial Shows Unprecedented Slowing in Brain Atrophy in Progressive MS 1:11

Upcoming Ocrevus Educational Webinars 3:17

MMJ Intl Asks FDA to Approve Cannabis-MS Study 4:22

Pre-Existing Conditions Bill is Healthcare Wolf in Sheep's Clothing 5:34

Progress in MS Research Lie Update 2018 11:33

Interview with Dr. Lisa Melton 12:30

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

Phase 2 Trial of Ibudilast in Progressive Multiple Sclerosis

Upcoming Ocrevus webinars

Legal Brief Filed in U.S. District Court by the National MS Society, American Cancer Society, the American Diabetes Association, the American Heart Association, and the American Lung Association

Ensuring Coverage for Patients with Pre-Existing Conditions Act

Video: Progress in MS Research Live Update 2018

Report: Health Economic Impact of Multiple Sclerosis in Australia 2017

Give RealTalk MS a Rating & Review

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RealTalk MS Episode 51 Hosted By: Jon Strum Guest: Dr. Lisa Melton

Tags: MS, MultipleSclerosis, MSResearch, MSResearchAustralia, Ibudilast, ClevelandClinic, CleClinicNews, Ocrevus, Cannabis, MMJInternational, PreExistingConditions, Prexxatstake, RealTalkMS

Part of the unpredictability of multiple sclerosis is that it can attack in so many different ways. MS can impact your physical well-being, your emotional well-being, your functional abilities and your quality of life. And if your response to MS is to be seen by a single healthcare professional, some of those many aspects of MS can end up being overlooked and, sometimes, even unrecognized. And so they go untreated. That's why the best approach to treating MS is a team approach. My guest is Dr. Jacqueline Nicholas, a clinical neuroimmunologist specializing in MS at OhioHealth in Columbus, OH. OhioHealth operates an MS Comprehensive Care Center that uses this interdisciplinary team approach to provide personalized treatment that's based upon each patient's specific needs.

We're also talking about the discovery of MCMS -- a new MS subtype. We'll tell you about an online resource that offers a comprehensive listing for every kind of support service in key cities throughout the U.S. We're looking at a report just issued by the nonpartisan Government Accountability Office that examines the ways that the U.S. Department of Health & Human Services has been gaming the Affordable Care Act -- and why that's going to cost you more money next year. And we're talking about a study that measures the impact of MS-related swallowing difficulties on quality of life.

We have a lot to talk about! Are you ready for RealTalk MS?

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New MS Subtype Discovered. Meet MCMS 2:25

GAO Report: HHS Should Enhance Its Management of Open Enrollment Performance 6:25

Study: The Impact of Swallowing Problems (Dysphagia) on Adults Living with MS 13:07

Interview with Dr. Jacqueline Nicholas 17:29

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

National MS Society Listing of MS Comprehensive Care Centers

GatherMS

Cortical Neuronal Densities and Cerebral White Matter Demyelination in Multiple Sclerosis: A Retrospective Study

Health Insurance Exchanges: HHS Should Enhance Its Management of Open Enrollment Performance

The Frequency of Dysphagia and Its Impact on Adults with MS

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RealTalk MS Episode 50 Hosted By: Jon Strum Guest: Dr. Jacqueline Nicholas

Tags: MS, MultipleSclerosis, MSResearch, DrJNicholas, OhioHealthMS, ClevelandClinic, DefendPreex, Sydney_Uni, RealTalkMS

Shawn Feliciano was diagnosed with MS in 2009, and in 2012, she decided to challenge herself while raising awareness about MS by going on a Big Hike -- hiking 817 miles, from Utah to Arizona. Shawn's Big Hike may have been the perfect metaphor for living with the challenges of MS, and we're talking about having the resilience to take on a challenge, no matter what your personal Big Hike might be.

We're also talking about a new study that demonstrates why it's in your best interest to stay on MS Disease Modifying Therapy if you've been diagnosed with relapsing remitting MS. Another study suggests that a diet high in vegetables and fish may reduce the risk of MS. And a third study may provide a path for better mitigating MS depression. We even take a look at two very different short films about MS that, taken together, give us a full, 360-degree depiction of what it's like to live with MS.

We have a lot to talk about! Are you ready for RealTalk MS?

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Study: RRMS Patients on Long-Term DMT Treatment Less Likely to Progrers to SPMS 1:08

Study: Diet High in Vegetables & Fish Reduces Risk of MS 5:20

Study: Treating Perceived Stress & Poor Sleep May Mitigate MS Depression 7:17

2 Short Films Take Different Paths to Illustrate the Challenges of Living With MS...And They're Both Right 10:30

Interview with Shawn Feliciano 14:13

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

Onset of Secondary Progressive MS Is Not Influenced by Current Relapsing Multiple Sclerosis Therapies

The International Progressive MS Alliance

A Healthy Dietary Pattern Associates with a Lower Risk of a First Clinical Diagnosis of CNS Demylenation

Perceived Cognitive Deficits & Depressive Symptoms In Patients with MS: Perceived Stress & Sleep Quality as Mediators

Short Film: Breakthrough MS

Short Film: Hidden

Share Your Feedback About RealTalk MS

Give RealTalk MS a Rating & Review

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RealTalk MS Episode 49 Hosted By: Jon Strum Guest: Shawn Feliciano

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, BigHike, ShawnFeliciano, Hidden, MSDiet, RealTalkMS

Elizabeth Jameson is an artist who specializes in creating a bridge between art and neuroscience. Since being diagnosed with MS, Elizabeth has transformed her brain MRI scans into remarkable and provocative images that challenge how we view the brain, disability, and illness. In addition to creating her amazing artwork, Elizabeth is an ePatient Scholar and advisor to Stanford Medicine X, and she's written extensively about patient-centered healthcare, design, and the arts. This week, we're standing at the intersection of art and science with my special guest, Elizabeth Jameson, talking about being an ePatient, embracing our imperfect bodies, and the importance of developing a creative narrative about living with MS.

We're also talking about a new theory on the cause of MS, how artificial intelligence may change medical imaging to better detect MS, and how one doctor used a bogus MS treatment to cheat his MS patients and their insurance companies out of thousands of dollars.

We have a lot to talk about! Are you ready for RealTalk MS?

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Researchers Offer a New Theory on the Cause OF MS :50

Australian Government Invests in AI Imaging Technique to Better Detect MS 5:54

A Doctor's Bogus MS Treatment Scams MS Patients and Their Insurance Companies 7:45

Market Research Company Recruiting People with Primary Progressive MS to Complete Paid Online Survey 14:19

Interview with Elizabeth Jameson 15:13

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

Hypothesis: Multiple Sclerosis Is Caused By Three-Hits, Strictly In Order, In Genetically Susceptible Persons

Australian Government Invests in Artificial Intelligence for Medical Imaging

California Medical Board Legal Complaint Against Dr. Michael Arlata

Jameson Fine Art

VIDEO: Elizabeth Jameson at TedxStanford: Learning to Embrace Our Imperfect Bodies

Mind On Fire (Elizabeth Jameson's Blog)

Share Your Feedback About RealTalk MS

Give RealTalk MS a Rating & Review

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RealTalk MS Episode 48 Hosted By: Jon Strum Guest: Elizabeth Jameson

Tags: MS, MultipleSclerosis, MSResearch, AI, ElizabethJameson, RealTalkMS