Five years ago, James Beard Award-winning chef Chris Shepherd decided to hold a barbecue event in his restaurant's parking lot, to raise money for the National MS Society. Today, the Southern Smoke Festival has grown into the largest 3rd party MS Society fundraising event in the United States, and with the 5th Annual Southern Smoke Festival just a few weeks away, we're talking with Chris about how this event got its start, and how it's grown to be one of the most noteworthy culinary events in the country.      We're also talking about the new vaccination guidelines (including flu shots!) that were just published by the American Academy of Neurology for people living with MS. We'll tell you about a study that gives you one more reason to start disease-modifying therapy early...and stay on it! We'll also tell you about a study that shows the cost of MS disease-modifying therapy has increased 7X over just 10 years for Medicare patients. And we've found one more study that demonstrates how people with more advanced progressive MS can still benefit from physical rehabilitation.   We have a lot to talk about! Are you ready for RealTalk MS??! ___________   Where You Can Find Me in September  :32

American Academy of Neurology Issues Vaccination Guidelines for People Living with MS   4:39

The Long-Term Effects of Disease-Modifying Therapy   6:15

DMT Costs Increase 7X for Medicare Patients  7:49

Upper-Limb Task-Oriented Rehab Shows Benefits for People Living with Progressive MS  11:56

My Interview with Chris Shepherd  15:01

Subscribe to RealTalk MS or Just Ask Alexa  27:13

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

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Southern Smoke Festival

Practice Guideline Update Summary: Vaccine-Preventable Infections and Immunization in Multiple Sclerosis -- Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology

The Long-Term Effects of Disease-Modifying Therapies on Disability in People Living with Multiple Sclerosis: A Systematic Review and Meta-Analysis

Trends in Prices, Market Share, and Spending on Self-Administered Disease-Modifying Therapies for Multiple Sclerosis in Medicare Part D

Preserved Brain Functional Plasticity After Upper Limb Task-Oriented Rehabilitation in Progressive Multiple Sclerosis

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RealTalk MS Episode 105 Hosted By: Jon Strum Guest: Chris Shepherd

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, SouthernSmokeTX, RealTalkMS

Fatigue isn't only a common symptom of MS; it's also one of the most disruptive symptoms of MS. It's hard to be out living life when you're trying to overcome that feeling of just not having any gas left in the tank. My guest is Dr. Ekaterina Dobryakova, a research scientist at the Kessler Foundation's Center for Traumatic Brain Injury Research, where she conducts research in cognitive dysfunction caused by traumatic brain injury and multiple sclerosis. Dr. Dobryakova's research has shown that there may be a behavioral intervention -- a treatment that doesn't involve any drugs -- that can effectively reduce MS fatigue.     We're also talking about the letter that former NBA championship-winning head coach David Blatt wrote, announcing his primary progressive MS diagnosis. We'll tell you about a discovery at UCLA that may explain why women are three times more likely than men to develop MS. And we'll tell you how you can join more than 4,600 people living with MS and be a part of an epic MS study from the comfort of your own home.   We have a lot to talk about! Are you ready for RealTalk MS??! ___________   Coach David Blatt's Letter About His Primary Progressive MS Diagnosis  1:15

X-Chromosome Gene May Explain Why Women Are Diagnosed With MS 3 Times More Often Than Men  8:29

Your Opportunity to Participate in the Slifka Study   11:54

My Interview with Dr. Ekaterina Dobryakova  14:15

Subscribe to RealTalk MS or Just Ask Alexa  29:14

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Kessler Foundation

STUDY: The X-Linked Histone Demethylase Kdm6a in CD4+ T Lymphocytes Modulates Autoimmunity

Participate in the Slifka Study

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RealTalk MS Episode 104 Hosted By: Jon Strum Guest: Dr. Ekaterina Dobryakova

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, KesslerFDN, Coach_Blatt, UCLA, RealTalkMS

My guest is Kyra Millich, who, until October of 2013, was a consumer protection litigator in San Francisco, recently married, and already thinking about planning a family. And that's when she received her MS diagnosis. I don't know if Kyra would say that her diagnosis changed her life, or clarified it, but I found Kyra's MS journey to be interesting, inspirational, and instructional. And I think you will too.     We're also talking about a breakthrough study in which a research team was able to reverse aging in some very specific brain stem cells in rats (and we'll tell you why that's particularly important to people living with MS!) We'll tell you about the discovery of the connection between certain MS lesions and progressive MS. There's an interesting survey on the economic impact of MS, and we want to remind you that this Thursday is Burgers to Beat MS day in Canada!

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

___________   Scientists Reverse Aging in Brain Stem Cells in Rats and Why That's a Breakthrough in MS Research  1:28

Smoldering Lesions May Signal Progressive MS  6:34

Patient Registry Shows the Economic Impact of MS   9:33

"Burgers to Beat MS" is Thursday at A&W in Canada   11:32

My Interview with Kyra Millich  14:24

Have an iPhone? It's Easy to Give RealTalk MS a Rating & Review  39:22

 ___________

ADD YOUR VOICE TO THE CONVERSATION

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

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STUDY: Niche Stiffness Underlies the Ageing of Central Nervous System Progenitor Cells

STUDY: Association of Chronic Active Multiple Sclerosis Lesions With Disability In Vivo

Burgers to Beat MS Online Donation Page

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RealTalk MS Episode 103 Hosted By: Jon Strum Guest: Kyra Millich

Tags: MS, MultipleSclerosis, MSResearch, RealTalkMS

My guest is Professor Helen Tremlett, who holds the Canada Research Chair in Neuroepidemiology and Multiple Sclerosis at the University of British Columbia, in Vancouver, Canada. Professor Tremlett has been involved in more than 200 published research studies, and we're going to talk about a few of them -- including the research that she's done on the correlation between MS disability progression and socioeconomic status.

    We're also talking about a study that indicates starting disease-modifying therapy early can slow brain atrophy among people living with MS. You already know that physical activity -- even walking -- is beneficial for people living with MS. We'll tell you why it might be even more beneficial for people living with MS to listen to music while they're walking. And we'll share news about potentially positive legislation for federal workers who are also MS caregivers.

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

___________   Starting Disease-Modifying Therapy Early Slows Brain Atrophy in MS  1:14

Why You'll Want to Take Your Tunes With You When You Walk  3:23

House Approves Paid Family Leave for Federal Workers   6:29

My Interview with Professor Helen Tremlett  11:38

RealTalk MS & Your Amazon Echo or Echo Dot  32:27

 

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Give RealTalk MS a Rating & Review 

STUDY: Socioeconomic Status and Disability Progression in Multiple Sclerosis: A Multinational Study

STUDY: The Gut Microbiota and Pediatric Multiple Sclerosis: Recent Findings

STUDY: Relapse Number and Earlier Intervention by Disease Modifying Drugs are Related With Progression of Less Brain Atrophy in Patients with Multiple Sclerosis

STUDY: Continuous 12 Min Walking to Music, Metronomes, and Silence: Auditory-Motor Coupling and Its Effects On Perceived Fatigue, Motivation, and Gait in Persons with Multiple Sclerosis

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RealTalk MS Episode 102 Hosted By: Jon Strum Guest: Professor Helen Tremlett

Tags: MS, MultipleSclerosis, MSResearch, caregiving

 

The Charcot Award recognizes lifetime achievement in outstanding research into the understanding and treatment of MS. My guest is Professor Catherine Lubetzki, this year's recipient of the Charcot Award. Professor Lubetzki is being recognized for her very significant contributions to better understanding the underlying disease processes of MS, and her groundbreaking work in furthering our understanding of demylenation and remylenation.         Professor Lubetzki is a professor of Neurology at Sorbonne University and head of the department of neurological diseases at Salpetriere Hospital, where she also coordinates the Salpetriere Multiple Sclerosis Clinical Research Center.   We're also talking about the research team that identified the specific brain cells that MS destroys. We'll tell you about a new oral disease modifying-therapy for relapsing-remitting MS that's making its way to market. And we'll tell you about the research team that has created a "predictive profile" that identifies who will likely be diagnosed with aggressive MS. We'll tip you off about the specific cognitive functions that are affected by MS depression. And we have lots of news for and about MS caregivers.

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

___________   International Research Team Identifies Which Brain Specific Brain Cells are Destroyed by MS  2:04

Oral DMT Pronesimod Moves Closer to FDA Approval 5:29

Early Clinical Markers Are Clues to Aggressive MS   7:20

MS Depression Affects Specific Cognitive Functions  11:18

Laws are Changing for Family Caregivers  12:48

My Work with Embracing Carers and Time Counts  16:29

My Interview with Professor Catherine Lubetzki  19:06

Have a Minute? Leave Us a Rating & Review!   29:59

 ___________

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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!

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STUDY: Nueronal Vulnerability and Multilineage Diversity in Multiple Sclerosis

Jansenn Reports Positive Top-Line Phase 3 Results for Ponesimod in Adults with Relapsing Multiple Sclerosis

STUDY: Early Clinical Markers of Aggressive Multiple Sclerosis

STUDY: Dissociable Cognitive Patterns Related to Depression and Anxiety in Multiple Sclerosis

VIDEO: Jon's Caregiving Story

Join Time Counts

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RealTalk MS Episode 101 Hosted By: Jon Strum Guest: Professor Catherine Lubetzki

Tags: MS, MultipleSclerosis, mssociety, MSResearch, MSIntFederation, caregiving, EmbracingCarers, EMDSerono

Welcome to Episode 100! In this special episode, we're talking with Jodi Michele Cooley, the winner of our "Be Our Special Guest on Episode 100" contest! At the age of 7, Jodi became an MS caregiver. And at the age of 34, she received her own MS diagnosis. In one way or another, MS has almost always been a part of Jodi's life. And yet, she is the very definition of the word "resilience."    

We're also re-visiting some of the best moments from some of our most popular interviews. You'll hear about research...you'll learn about MS advocacy...and you'll meet some amazing MS Warriors!

We have a lot to look back on. Are you ready for RealTalk MS??!

___________   ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.

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

Email: [email protected]Phone: (310) 526-2283

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LINKS

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RealTalk MS Episode 100 Hosted By: Jon Strum Guest: Jodi Michele Cooley

Tags: MS, MultipleSclerosis, mssociety, MSResearch, RealTalkMS

My guest is Jenny Freeman, Professor of Physiotherapy and Rehabilitation at the University of Plymouth, in the United Kingdom. Professor Freeman's research has appeared in more than 150 journals and publications. And she's the co-author of Multiple Sclerosis Care -- A Practical Manual, the reference book for all aspects of MS care. We're going to be talking with Professor Freeman about the just-published results of a clinical trial that I think will add a very effective component to physical rehabilitation for people living with progressive MS.    

 

And if you believe that losing thousands of dollars and gaining no benefit is the worst thing that can go wrong when it comes to unproven stem cell treatments for MS...well, you're not even close. We're talking about how bad it can really get.

We'll also tell you about the new pilot research grants that the National MS Society just announced. You'll learn about a program that offers amazing outdoor adventure experiences to young adults who are living with MS. And did we also mention that these programs are free??? And you'll have an opportunity to participate in a really interesting clinical trial.

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

NEW! Download a transcript of this episode!

___________   Unproven Stem Cell Treatments for MS -- The Worst Thing That Can Happen is A Lot Worse Than You Think It Is!  1:44

National MS Society Funds 10 High-Risk Pilot Research Grants  10:20

First Descents Expands Outdoor Adventure Experiences for Young Adults Living with MS   12:50

Your Opportunity to Participate in a Really Interesting Clinical Trial (No Drugs Involved)  14:35

Study Results Reveal Physical Rehabilitation That Improves the Lives of People Living with Progressive MS  16:09

My Interview with Professor Jenny Freeman  17:19

RealTalk MS Episode 100 Is Just 1 Week Away! How To Leave Us a Rating & Review   28:27

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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!

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LINKS

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Standing Up in Multiple Sclerosis (SUMS)

STUDY: Assessment of a Home-Based Standing Frame Programme in People with Progressive MS (SUMS): A Pragmatic, Multi-Centre, Randomised, Controlled Trial and Cost-Effectiveness Analysis

National MS Society Announces New Pilot Research Projects Beginning Summer 2019

First Descents Program Inquiry

PARTICIPATE: Interventions to Improve Cognitive Functioning In Multiple Sclerosis

Website: The Ohio State University Clinical Neuroscience Lab

Phone: 614-292-9568

Email:  [email protected]

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NEW! Download a Transcript of This Episode

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RealTalk MS Episode 99 Hosted By: Jon Strum Guest: Professor Jenny Freeman

Tags: MS, MultipleSclerosis, mssociety, MSResearch, Stemcells, FirstDescents, RealTalkMS

Applying for social security disability benefits can be difficult. It's a stressful and challenging process with an outcome that seems fraught with uncertainty.   My guest, Jamie Hall, has represented social security disability claimants before administrative law judges and the Appeals Council in 24 different states. He is also a strong supporter of the National MS Society, where he's conducted numerous seminars on social security disability issues. Jamie is a member of the MS Society's 2010 Leadership Class, and he served as an editor of the National MS Society's SSDI guidebook. Today, we're talking with Jamie about how to take some of that stress and uncertainty out of the process.  

 

We're also talking about the serious blow to your ability to access quality healthcare that occurred last week. We'll explain why the World Health Organization rejected the MS International Federation's application to add 3 MS disease-modifying therapies to the 2019 Essential Medicines List. There's news about the connection between your lifestyle choices and MS depression, and I'll share why I see MS depression as a potential matter of life or death.

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

NEW! Download a transcript of this episode!

___________   The Facts Behind the Attack on the Affordable Care Act  2:00

World Health Organization Rejects All MS Medications Submitted for the 2019 Essential Medicines List  10:04

Diagnosing MS With a "Breath Biopsy"   13:00

Australian Researchers Show a Link Between Lifestyle Choices and  MS Depression  15:29

Why Treating MS Depression Matters So Much  19:47

My Interview with Jamie Hall  23:15

Have You Downloaded the RealTalk MS App?  40:11

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

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LINKS

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The Law Office of Jamie R. Hall

Applying for Disability Benefits: A Guidebook for People with MS and Their Healthcare Providers (PDF)

STUDY: Exhaled Breath Markers for Nonimaging and Noninvasive Measure for Detection of Multiple Sclerosis

STUDY: Modifiable Factors Associated with Depression and Anxiety in Multiple Sclerosis

STUDY: Association Between Suicide and Multiple Sclerosis: An Updated Meta-Analysis

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RealTalk MS Episode 98 Hosted By: Jon Strum Guest: Jamie Hall, Esq.

Tags: MS, MultipleSclerosis, MSResearch, AffordableCareAct, Depression, MSIntFederation, RealTalkMS

My guests this week are 2 exceptional MS warriors, Mike Zimits and Cat Tsigakos. When Mike was diagnosed with MS, he decided he could best help himself by getting into shape, so he got on a bike. And then he convinced his friend's sister, Catherine, to get on a bike. Cat was serving as her brother's caregiver after he was diagnosed with progressive MS.   So these 2 people, who had each been affected differently by MS, went from being biking newbies to avid cyclists -- even taking on several stages of the Tour de France. They also raised more than one million dollars for MS research while reminding the world that having an MS diagnosis doesn't mean that you're no longer entitled to have hopes, dreams, and goals.   

 

We're also taking a look back at this year's World MS Day, and talking about some of the 400 events that raised awareness about MS in 79 countries. We'll tell you about the MS stem cell research that's about to begin on the International Space Station. We'll review the outcome of a specific rehab treatment that's been shown to improve hand and upper limb ability among people living with MS.

We'll let you know how you can participate in an important MS rehabilitation clinical trial. And we'll tell you about a research study that looked at the economic burden faced by people living with a minimal level of MS disability. The results might surprise you!

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

NEW! Download a transcript of this episode!

___________   World MS Day Recap -- Over 400 Events in 79 Countries  1:16

Stem Cells Travel to Outer Space for MS Research  3:52

Task-Oriented Upper Limb Rehab Program Delivers Results for People Living with MS   7:11

You Can Participate in the STEP For MS Study  9:53

Low MS Disability = A High Level of Economic Burden  13:14

My Interview with Mike Zimits & Cat Tsigakos  18:15

Have You Subscribed to RealTalk MS?  33:11

 ___________

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.

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

Email: [email protected]Phone: (310) 526-2283

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LINKS

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Join Mike & Cat on Team MSAA Bike Rides

The Effects of Microgravity on Microglia 3-Dimensional Models of Parkinson's Disease and Multiple Sclerosis

Intensity-Dependent Clinical Effects of an Individualized Technology-Supported Task-Oriented Upper Limb Training Program in Multiple Sclerosis: A Pilot Randomized Controlled Trial

STEP for MS Clinical Trial Eligibility Criteria & Trial Site Contact Information

Economic Burden of Multiple Sclerosis in a Population with Low Physical Disability

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NEW! Download a Transcript of This Episode

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RealTalk MS Episode 97 Hosted By: Jon Strum Guest: Mike Zimits & Catherine Tsigakos

Tags: MS, MultipleSclerosis, MSResearch, MSAssociation, RealTalkMS

Do you ever wonder how or why your neurologist recommends one disease-modifying therapy instead of another? For some people, their first disease-modifying therapy is a mild drug with few side effects. For others, their first disease-modifying therapy might be a more high-powered drug that carries the risk of more possible side effects. But how do neurologists really know when it's appropriate to use one specific disease-modifying therapy or even when it's appropriate to switch to another?    

 

My guest is Dr. Ellen Mowry, Associate Professor of Neurology and the Director of the MS Experimental Therapeutics Program at Johns Hopkins University. Dr. Mowry has devoted her entire career to MS research, and her past research has led to breakthroughs in our understanding of MS. Now, Dr. Mowry is the co-principal investigator of a nationwide research study whose outcome could have an impact on the treatment strategy for everyone diagnosed with MS.

We're also talking about the effectiveness of the Wahls Diet in managing MS fatigue, we'll update you on the permanent injunction issued by a U.S. Federal Court against a company that operates shady stem cell clinics, and you'll learn everything you really need to know about Vitamin D and MS.

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

NEW! Download a transcript of this episode!

___________   Like to Read? Now You Can Download a Transcript of Every New Episode of RealTalk MS  :26

The Wahls Diet (Plus Lots of Other Interventions) May Reduce MS Fatigue  2:17

U.S. District Court Judge Prevents U.S. Stem Cell From Extracting Stem Cells From Your Fat And Claiming That It Will Be Of Any Benefit To You   7:22

My Interview with Dr. Ellen Mowry  13:46

Have You Subscribed to RealTalk MS?  33:02

 ___________

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.

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

Email: [email protected]Phone: (310) 526-2283

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LINKS

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TREAT-MS on clinicaltrials.gov

STUDY: Lipid Profile is Associated with Decreased Fatigue in Individuals with Progressive Multiple Sclerosis Following a Diet-Based Intervention: Results from a Pilot Study

FDA Statement on Stem Cell Clinic Permanent Injunction and FDA's Ongoing Efforts to Protect Patients from Risks of Unapproved Products

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RealTalk MS Episode 96 Hosted By: Jon Strum Guest: Dr. Ellen Mowry

Tags: MS, MultipleSclerosis, MSResearch, HopkinsMedicine, terrywahls, US_FDA, RealTalkMS