msactivist

Explore "msactivist" with insightful episodes like "Episode 81: Almost One Million! The Prevalence of MS with National MS Society CEO Cyndi Zagieboylo, Dr. Bruce Bebo, & Dr. Ruth Ann Marrie", "Episode 80: Access to Affordable MS Medications with MS Activist Diane Whitcraft", "Episode 78: The Importance of MS Advocacy with Bari Talente", "Episode 67: MS Research with Dr. Larry Sherman" and "Episode 65: Answering Listener Questions with Certified MS Nurse Cherie Binns" from podcasts like ""RealTalk MS", "RealTalk MS", "RealTalk MS", "RealTalk MS" and "RealTalk MS"" and more!

Episodes (8)

Episode 81: Almost One Million! The Prevalence of MS with National MS Society CEO Cyndi Zagieboylo, Dr. Bruce Bebo, & Dr. Ruth Ann Marrie

It's MS Awareness Week! And the single event that is likely going to have the most impact in raising awareness of MS in the United States is the recent announcement of the MS Prevalence Study results.

The results of this study corrected the decades old notion that there were only about 400,000 people living with MS in the United States. We now know that the number of people living with MS in the U.S. is closer to one million. More than twice as many as had been previously estimated.

In this special RealTalk MS episode, we're going to look at MS prevalence from a number of different perspectives. My guests include National MS Society President and CEO, Cyndi Zagieboylo, the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, and MS Prevalence Study Investigator, Dr. Ruth Ann Marrie.

But what about people who are living with MS? What are their thoughts about being one in a million? We're also talking with MS Activists Tami Ryan, Karen Jackson, and Dan & Jennifer Diggman.

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

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It's MS Awareness Week :22

My Interview with National MS Society CEO, Cyndi Zagieboylo 3:40

My Interview with National MS Society Executive Vice-President of Research, Dr. Bruce Bebo 12:32

My Interview with MS Prevalence Study Investigator, Dr. Ruth Ann Marrie 24:18

Comments about the MS Prevalence Study from MS Activists Tami Ryan, Karen Jackson, and Dan & Jennifer Digmann 34:34

Join the RealTalk MS Conversation 38:13

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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: jonstrum@RealTalkMS.com
Phone: (310) 526-2283

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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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

The Prevalence of MS in the United States: A Population-Based Estimate Using Health Claims Data

A New Way to Estimate Neurologic Disease Prevalence in the United States Illustrated with MS

Validation for an Algorithm For Identifying MS Cases in Administrative Health Claims Datasets

Give RealTalk MS a Rating & Review

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

RealTalk MS Episode 81
Hosted By: Jon Strum
Guests: Cyndi Zagieboylo, Dr. Bruce Bebo, Dr. Ruth Ann Marrie, Tami Ryan, Lisa Jackson, Dan & Jennifer Digmann

Tags: MS, MultipleSclerosis, MSResearch, mssociety, MSActivist, TwiceAsMany, MSPrevalence, RealTalkMS

enMarch 12, 2019

Episode 80: Access to Affordable MS Medications with MS Activist Diane Whitcraft

My guest this week is Diane Whitcraft, a retired middle school teacher who had been taking the same MS prescription medication for more than 20 years. But once Diane retired and her health insurance changed, that same medication became unaffordable.

Diane traveled to Washington D.C. last month, as Wisconsin Senator Tammy Baldwin's guest at the President's State of the Union address. She is back in our nation's capitol this week, speaking

at the National MS Society's Public Policy Conference about the importance of having access to affordable MS prescription medications.

Senator Tammy Baldwin (right) and Diane Whitcraft

We're also talking about the official statement on stem cell therapy for MS by The American Society for Blood & Marrow Transplantation. We'll tell you about a new study that measured the impact of diet and other lifestyle factors on MS progression, you'll hear about a different study that highlighted the large percentage of people who are being misdiagnosed with MS, and you'll learn how some new emojis will help to de-stigmatize disability.

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

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It's Our Day on the Hill :57

The American Society for Blood & Marrow Transplantation Makes an Official Statement About Stem Cell Therapy for MS 2:48

STUDY: The Impact of Diet & Lifestyle Factors on MS Progression 5:47

STUDY: 1 in 5 Patients Referred to 2 Academic MS Centers Are Misdiagnosed 8:17

How New Emojis Can Help De-Stigmatize Disability 5:47

My Interview with MS Activist Diane Whitcraft 12:36

Join the RealTalk MS Conversation 28:43

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ADD YOUR VOICE TO THE CONVERSATION

Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jonstrum@RealTalkMS.com
Phone: (310) 526-2283

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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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Give RealTalk MS a Rating & Review

Autologous Hematopoietic Cell Transplantation for Treatment-Refractory Relapsing Multiple Sclerosis: Position Statement From the American Society For Blood and Marrow Transplantation

Dietary and Lifestyle Factors in Multiple Sclerosis Progression: Results from a 5-Year Longitudinal MRI Study

Incidence of Misdiagnosis of Multiple Sclerosis in Referrals to Two Academic Centers

Preview the New Emojis That Will Help to De-Stigmatize Disability

National Multiple Sclerosis Society: Advocate For Change

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

RealTalk MS Episode 80
Hosted By: Jon Strum
Guest: Diane Whitcraft

Tags: MS, MultipleSclerosis, MSResearch, mssociety, MSActivist, MSPPC19, RealTalkMS

enMarch 04, 2019

Episode 78: The Importance of MS Advocacy with Bari Talente

Over the past year, we've seen our access to affordable, quality healthcare come under unprecedented attack. We've seen a federal judge declare the Affordable Care Act to be unconstitutional. And we continue to see our access to affordable prescription medications -- the medications that have been shown to delay the progression of MS and extend the quality of life for everyone living with MS -- that access remains threatened by the constant skyrocketing cost of those medications. That's why advocating on behalf of our own interests is so important to the MS community.

My guest this week is Bari Talente, the Executive Vice-President of Advocacy for the National Multiple Sclerosis Society. We're talking about the National MS Society's upcoming Public Policy Conference, the legislative issues that affect people living with MS in the United States, and the importance of MS advocacy.

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

ADD YOUR VOICE TO THE CONVERSATION

Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jonstrum@RealTalkMS.com

Phone: (310) 526-2283

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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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Give RealTalk MS a Rating & Review

National Multiple Sclerosis Society: Advocate For Change

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

RealTalk MS Episode 78
Hosted By: Jon Strum
Guest: Bari Talente

Tags: MS, MultipleSclerosis, MSResearch, mssociety, MSActivist, RealTalkMS

enFebruary 19, 2019

Episode 67: MS Research with Dr. Larry Sherman

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?!

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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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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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

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

Give RealTalk MS a Rating & Review

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

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

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

enDecember 04, 2018

Episode 65: Answering Listener Questions with Certified MS Nurse Cherie Binns

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?!

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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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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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

First Descents

National MS Society Announces 20 Novel Research Projects

Give RealTalk MS a Rating & Review

___________

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

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

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

enNovember 20, 2018

Episode 64: Patient-Driven MS Drug Development with Laura Kolaczkowski

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?!

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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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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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

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

Floodlight Open

VIDEO: We Believe

iConquerMS

Give RealTalk MS a Rating & Review

___________

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

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

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

enNovember 13, 2018

Episode 62: New Guidelines for Managing MS Cognitive Dysfunction with Dr. John DeLuca

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?!

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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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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

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

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

Give RealTalk MS a Rating & Review

___________

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

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

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

enOctober 30, 2018

Episode 61: Voting IS MS Advocacy with MS Activist Karen Jackson

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?!

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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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LINKS
If 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

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

Give RealTalk MS a Rating & Review

___________

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

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

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

enOctober 23, 2018

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msactivist

Episodes (8)

Episode 81: Almost One Million! The Prevalence of MS with National MS Society CEO Cyndi Zagieboylo, Dr. Bruce Bebo, & Dr. Ruth Ann Marrie

Episode 80: Access to Affordable MS Medications with MS Activist Diane Whitcraft

Episode 78: The Importance of MS Advocacy with Bari Talente

Episode 67: MS Research with Dr. Larry Sherman

Episode 65: Answering Listener Questions with Certified MS Nurse Cherie Binns

Episode 64: Patient-Driven MS Drug Development with Laura Kolaczkowski

Episode 62: New Guidelines for Managing MS Cognitive Dysfunction with Dr. John DeLuca

Episode 61: Voting IS MS Advocacy with MS Activist Karen Jackson