RealTalk MS

Latest Episodes:

Episode 67: MS Research with Dr. Larry Sherman Dec 04, 2018

Show notes

Research is the engine that drives us toward better understanding MS, better treating MS, and one day, curing MS. My guest on the podcast is Dr. Larry Sherman, who plays a vital role on the front lines of MS research. We're talking with Dr. Sherman about some of his most significant research and his unique research lab. We're also talking about two important victories for MS Activists. We'll tell you about the EMA approval of Gilenya for treating pediatric MS, the FDA approval of a generic for Aubagio, new technology that will enable people with MS to pilot their wheelchairs by flexing a couple of facial muscles, and the rehab technique that can benefit Olympic athletes and people living with MS. We have a lot to talk about! Are you ready for RealTalk MS?! ___________

MS Activists Have Something to Celebrate 0:22

National Neurological Conditions Surveillance System Will Study Data for MS 4:48

European Medicines Agency Approves Gilenya for Pediatric MS 6:41

FDA Approves Generic for Aubagio 8:21

New Technology Lets You Pilot a Wheelchair By Flexing Facial Muscles 9:32

Motor Imagery with Verbal Cues & Music May Lead to Improved Walking, Fatigue & Quality of Life for People Living with MS 11:31

My Interview with Dr. Larry Sherman 15:34

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LINKSIf 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

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National MS Society: Get Involved & Advocate For Change

Limbitless Solutions Project Xavier

STUDY: Effects and Mechanisms of Differently Cued and Non-Cued Motor Imagery in People with Multiple Sclerosis: A Randomised Controlled Trial

Oregon National Primate Research Center

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RealTalk MS Episode 67 Hosted By: Jon Strum Guest: Dr. Larry Sherman

Tags: MS, MultipleSclerosis, MSsociety, ACA, MSActivist, Gilenya, Aubagio, Limbitless3D, RealTalkMS

Episode 66: Embracing Carers with EMD Serono's Scott Williams Nov 27, 2018

Show notes

We're into the final few days of National Family Caregivers Month, and my guest on the podcast is Scott Williams, Vice President, Head of Global Patient Advocacy and Strategic Partnerships at EMD Serono. We're talking with Scott about EMD Serono's commitment to MS caregivers. We're also talking about creating a caregiver protocol that becomes part of the conversation in the neurologist's office as soon as someone is newly diagnosed with MS. We'll tell you about the FDA's new warning about stopping Gilenya. We'll share news about two different clinical trials that are exploring two different cell therapies for treating progressive MS. And we'll share some amazing statistics that demonstrate the reach and effectiveness of the National MS Society's MS Navigator program, a remarkable one-on-one MS support program. We have a lot to talk about! Are you ready for RealTalk MS?! ___________

Can We Talk About Establishing a Caregiver Protocol? 1:04

FDA Warns About Severe MS Worsening After Stopping Gilenya 4:54

Phase 2 Clinical Trial Planned for NurOwn Cell Therapy for Treating Progressive MS 6:30

ATA190 Cell Therapy Shows Promising Phase 1 Clinical Trial Results for Treating Progressive MS 7:43

MS Society's MS Navigator Program Demonstrates Reach & Effectiveness 10:36

Scott Williams, Vice-President, Head of Global Patient Advocacy and Strategic Partnerships Discusses EMD Serono's Commitment to MS Caregivers 14:08

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LINKSIf 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

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FDA Warns About Severe Worsening of Multiple Sclerosis After Stopping the Medicine Gilenya

BrainStorm Cell Therapeutics Announces Submission of IND for NurOwn in Progressive Multiple Sclerosis

Epstein-Barr Virus-Specific T Cell Therapy for Progressive Multiple Sclerosis

Ask An MS Navigator

RealTalk MS Episode 19: MS Navigators -- A Seriously Remarkable Service That You Need to Know About

DOCUMENTARY: Seeing MS From the Inside Out

Embracing Carers

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RealTalk MS Episode 66 Hosted By: Jon Strum Guest: Scott Williams

Tags: MS, MultipleSclerosis, MSsociety, Gilenya, ProgressiveMS, MSInsideOut, EmbracingCarers, Caregiving, RealTalkMS

Episode 65: Answering Listener Questions with Certified MS Nurse Cherie Binns Nov 20, 2018

Show notes

I've received some great questions from some of my listeners. And this week, Cherie Binns, an Internationally Certified MS Nurse and the co-chair of the iConquerMS Research committee, is joining me to answer listener questions. She's even going to share some of her tips for living well with MS! We'll also explain why the Americans with Disabilities Act applies to sports arenas, but not to your doctor's office. We'll tell you about an outdoor adventure organization for young adults with cancer that's just expanded it's no-cost programs to include young adults living with MS. The National MS Society has awarded pilot funding to 20 high-risk novel research projects. We'll tell you about what some of these projects are hoping to achieve. And this week, we'll tell you about the people and organizations that we're especially thankful for. We have a lot to talk about! Are you ready for RealTalk MS?! ___________

The ADA Extends to Sports Arenas, But Not Your Doctor's Office 2:37

First Descents Extends Its Outdoor Adventure Program to Young Adults Living with MS 7:19

National MS Society Has Awarded Pilot Funding for 20 High-Risk Novel Research Projects 8:38

Have a Question? Send it In! 13:32

Internationally Certified MS Nurse Cherie Binns Answers Your Questions & Shares Some Tips for Living Well with MS 14:24

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LINKSIf 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

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First Descents

National MS Society Announces 20 Novel Research Projects

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RealTalk MS Episode 65 Hosted By: Jon Strum Guest: Cherie Binns

Tags: MS, MultipleSclerosis, MSActivist, iConquerMS, MSsociety, RealTalkMS

Episode 64: Patient-Driven MS Drug Development with Laura Kolaczkowski Nov 13, 2018

Show notes

Patient-centered research is based on an understanding that patients themselves have unique perspectives that can help to mold, change, and improve the work of finding answers to clinical questions. My guest on the podcast is Laura Kolaczkowski, the co-Principal Investigator for iConquerMS. We're talking about the impact this people-powered research network is having on MS research, and how the first ever patient-driven MS drug development project came about. We'll also help you wade through the information and misinformation that surrounds whether people with MS should get a flu shot this season. We'll tell you about a study that demonstrates how ballet exercise can help improve balance and motor control for people living with MS, why a new and more powerful MRI scanner is good news for the MS community, a new smartphone-based study that you can be a part of, and a newly-released video manifesto that you have to see! We have a lot to talk about! Are you ready for RealTalk MS?! ___________

MS & Flu Shots 5:14

Study: Ballet Exercise Improves Balance & Motor Control in People Living with MS 8:05

Genentech Launches Floodlight Open 11:22

FDA Approves More Powerful MRI for Clinical Use 13:33

National MS Society Releases We Believe, a Video Manifesto 15:41

My Interview with Laura Kolaczkowski 17:06

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LINKSIf 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

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STUDY: Targeted Ballet Program Mitigates Ataxia and Improves Balance in Females with Mild-to-Moderate Multiple Sclerosis

Floodlight Open

VIDEO: We Believe

iConquerMS

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RealTalk MS Episode 64 Hosted By: Jon Strum Guest: Laura Kolaczkowski

Tags: MS, MultipleSclerosis, MSActivist, iConquerMS, MSsociety, RealTalkMS

Episode 63: Overcoming Caregiving Challenges with Dr. Amy Sullivan Nov 06, 2018

Show notes

Caregiving carries a lot of challenges. And for some people, it can feel overwhelming. So, what are the things that make being a caregiver for someone living with a chronic illness like MS so challenging? We're kicking off National Family Caregivers Month with my guest, Dr. Amy Sullivan, Director of Behavioral Medicine, Research and Training at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic, and we're talking about how to best navigate some of the challenges that go along with being a caregiver for someone living with MS. We're also talking about today's election in the U.S., and what it means for people living MS, the unresolved status of Ocrevus as a treatment for primary progressive MS in the UK, and the fast-tracking of Mavenclad in the UK. We'll tell you about the bus driver who stood up for a man with MS, an insurance company that will fly people to Mexico and pay a cash bonus to buy their MS prescription medication there, and we'll share results from the Embracing Carers International Survey. We have a lot to talk about! Are you ready for RealTalk MS?! ___________

It's Election Day in the U.S. (and what that means to people living with MS!) :22

The Bus Driver Who Stood Up for a Man with MS 2:49

An Insurer Will Fly People with MS to Mexico to Buy Their Prescription Drugs 4:00

Ocrevus On Hold for People with Primary Progressive MS in the UK 5:49

Mavenclad Fast-Tracked in the UK 7:59

Embracing Carers Campaign & Can Do MS Announce a New Collaboration 9:42

Embracing Carers International Survey Results 10:52

Interview with Dr. Amy Sullivan 12:55

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LINKSIf 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

Download the RealTalk MS App for iOS

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RealTalk MS Congressional Report Card

CanDo-MS Embracing Carers Program

Recommendations for Cognitive Screening and Management in Multiple Sclerosis Care

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RealTalk MS Episode 63 Hosted By: Jon Strum Guest: Dr. Amy Sullivan

Tags: MS, MultipleSclerosis, MSActivist, DrAmyBSullivan, ClevelandClinic, Caregiving, Caregiver, Ocrevus, Mavenclad, EMDSerono, EmbracingCarers, CanDoMS, RealTalkMS

Episode 62: New Guidelines for Managing MS Cognitive Dysfunction with Dr. John DeLuca Oct 30, 2018

Show notes

Cognitive dysfunction can profoundly affect people living with MS, yet it's frequently overlooked and left untreated. That's why the National MS Society convened a working group of world-class experts to explore how cognitive dysfunction was being assessed and to develop a set of guidelines designed to improve the process of cognitive screening and management in MS care. My guest is Dr. John DeLuca, the Senior Vice-President of Research & Training at the Kessler Foundation, and the co-author of the just-published report that details this important set of new guidelines. We're also making an exciting announcement with the Accelerated Cure Project for MS about the RealTalk MS podcast. We're talking about how you can prepare for next week's midterm election in the U.S., we'll tell you how the Federal Trade Commission went after 2 crooked stem cell clinics that claimed they were curing MS, we'll give you a heads-up about MS stem cells that really are heading for outer space, and you'll hear about an investment that the National MS Society made in some exciting cutting-edge commercial biotech research. We have a lot to talk about! Are you ready for RealTalk MS?! ___________

Some Exciting News About RealTalk MS 2:16

How You Can Prepare to Vote in the U.S. Next Week 4:10

2 Phony Stem Cell Clinics Caught Defrauding Patients 10:09

MS Stem Cells Are Headed for Outer Space 14:22

National MS Society Invests in Cutting-Edge Commercial BioTech Research 16:20

Interview with Dr. John DeLuca 17:58

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LINKSIf 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

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iConquerMS

RealTalk MS Congressional Report Card

FTC Complaint Against Dr. Bryn Jarald Henderson's Stem Cell Clinics

Recommendations for Cognitive Screening and Management in Multiple Sclerosis Care

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RealTalk MS Episode 62 Hosted By: Jon Strum Guest: Dr. John DeLuca

Tags: MS, MultipleSclerosis, MSActivist, Election2018, iConquerMS, KesslerFdn, RealTalkMS

Episode 61: Voting IS MS Advocacy with MS Activist Karen Jackson Oct 23, 2018

Show notes

We're 2 weeks away from an event that's going to have an impact on every person in the United States who's living with MS...or any other chronic illness. Because in 2 weeks time - on November 6th - an election's taking place, and healthcare is on the ballot. Maybe not directly...maybe not explicitly...but make no mistake, the choices that voters in America make on election day are going to have a huge affect on our access to healthcare, the cost of healthcare, and the protection that exists today for people living with pre-existing conditions. That's why I'm launching the MS Congressional Report Card. It's an easy way for you to see whether your elected representatives in Congress have supported you and others affected by MS. Every member of Congress has received a letter grade based upon what they did -- or didn't do -- to support people affected by MS. You'll be able to see exactly how well your Representatives and Senators have supported the issues that directly affect you. And then, with that knowledge in hand, you'll be ready to cast your vote on November 6th. We're also talking with my special guest, MS Activist Karen Jackson, about access issues when it comes to casting your vote. We'll tell you about a documentary film that features a new way of interpreting the many sides of living with MS, a possible predictor of brain atrophy in Progressive MS, a new framework for examining how exercise impacts neuroplasticity, and more! We have a lot to talk about! Are you ready for RealTalk MS?! ___________

Introducing the RealTalk MS Congressional Report Card 1:50

A New Documentary -- "Seeing MS from the Inside Out" 5:29

Neurofilament Light Chain Level as a Predictor of Brain Atrophy in Progressive MS 8:38

Conceptual Framework Proposed to Examine Role of Exercise in MS 11:00

Interview with MS Activist Karen Jackson 13:15

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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

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RealTalk MS Congressional Report Card

Video: "Seeing MS from the Inside Out"

Neurofilament Light Levels in the Blood of Patients with Secondary Progressive MS are Higher than in Primary Progressive MS and May Predict Brain Atrophy In Both MS Subtypes

Integrative CNS Plasticity with Exercise in MS: The PRIMERS (Processing, Integration of Multisensory Exercise-Related Stimuli) Conceptual Framework

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RealTalk MS Episode 61 Hosted By: Jon Strum Guest: Karen Jackson

Tags: MS, MultipleSclerosis, MSActivist, MSInsideOut, KesslerFdn, RealTalkMS

Episode 60: ECTRIMS Wrap-Up Oct 15, 2018

Show notes

I'm back from Berlin, Germany, where I attended the 34th annual ECTRIMS Congress, and the single biggest challenge that I faced during the 3-day conference was trying to decide which sessions I wanted to attend. With 80 live presentations, more than 1,000 poster presentations, and any number of meetings and even casual conversations that seem to pop up everywhere, it's challenging trying to take it all in. Although ECTRIMS has ended, there's still a bit more to report from the conference, so please consider this podcast episode as the ECTRIMS wrap-up.

We're talking about the effectiveness of a cannabidiol spray on MS spasticity. We'll tell you how environmental factors can impact MS, and we'll explain the two different environments you should be paying attention to. And you'll hear about the study that identified how neurofilament light chain levels can be used in clinical practice to identify which people living with relapsing remitting MS might be at greater risk of increased disease activity and progression.

And we'll wrap up our ECTRIMS 2018 episode by re-visiting my conversation with Bruce Bebo, Executive Vice-President of Research at the National MS Society. Bruce will share his perspective on some of the presentations that caught his attention during the conference, and we'll talk about the $12 million dollar research investment that the National MS Society has just announced.

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

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The Efficacy of Cannabidiol Spray on MS Spasticity 1:50

The Impact of Environmental Factors on MS 3:35

Neurofilament light chain may identify people with RRMS who are at greater risk of disease progression 5:36

Interview with Bruce Bebo, Executive Vice-President of Research at the National MS Society 9:27

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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

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Video: "Seeing MS from the Inside Out"

ECTRIMS 2018

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RealTalk MS Episode 60 Hosted By: Jon Strum Guest: Bruce Bebo, Ph.D.

Tags: MS, MultipleSclerosis, ECTRIMS2018, MSInsideOut, RealTalkMS

Episode 59: Live from Day 3 of ECTRIMS 2018 Oct 12, 2018

Show notes

It's the 3rd and final day at ECTRIMS in Berlin! Today, we're taking you to a special documentary screening that we've been keeping under wraps! (You can watch the trailer as part of the "Bonus" content in the RealTalk MS app!)

We're talking about the amazing changes in almost every aspect of how we look at MS that have all taken place within just 25 years. We'll walk you through a couple of the scientific sessions that really stood out earlier today. And we'll tell you how you can find scientific victory in the midst of what some people might consider a setback.

ECTRIMS 2018 feels as though it's been a non-stop 3-day marathon, and this episode of RealTalk MS will take you to the finish line. We have a lot to talk about!

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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

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Video: "Seeing MS from the Inside Out"

ECTRIMS 2018

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RealTalk MS Episode 59 Hosted By: Jon Strum

Tags: MS, MultipleSclerosis, ECTRIMS2018, Shiftms, MSInsideOut, RealTalkMS

Episode 58: Live from Day 2 of ECTRIMS 2018 Oct 12, 2018

Show notes

It's Day 2 at ECTRIMS in Berlin! Today, we're talking about the Shift.ms booth in the Exhibition Hall, where you can take part in a virtual reality demonstration of what it might be like to accomplish even the simplest tasks if you're living with MS.

And if you've downloaded the RealTalk MS app from the Apple App Store for iOS or the Google Play Store for Android, I hope you enjoy the bonus video of the virtual reality demonstration that I shot on the Exhibition Hall floor. I wanted to get an expert's opinion about which ECTRIMS presentations were especially noteworthy, so I turned to Bruce Bebo, the Executive Vice President of Research at the National MS Society. Don't miss my exclusive conversation with Bruce in today's podcast episode. Be sure to download the special ECTRIMS episode of RealTalk MS tomorrow! 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

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View "Hidden" by Shift.ms

ECTRIMS 2018

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RealTalk MS Episode 58 Hosted By: Jon Strum Guest: Bruce Bebo, Ph.D.

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