I'm back from attending the MS International Federation's People With MS Forum in Athens, Greece, and it was a remarkable few days spent with some truly remarkable people. In this episode of RealTalk MS, you'll meet two of those remarkable people. First, we'll talk with Dr. Laura Musambayi, the founder of the MS Association of Kenya. Dr. Musambayi will share her experiences in a country of 50 million people, with just 20 neurologists, and no access to disease-modifying therapy.      Then, you'll meet Gabriela Hidalgo, a Project Manager at Esclerosis Multiple España, who will tell us about a very successful program designed to reduce isolation and depression and re-connect people affected by MS with their lives.   We're also talking about an article that got my attention last week. Professor Alan Thompson wrote that We Can Stop MS -- And This Is How. (HINT: He's 100% right!)   We have a lot to talk about! Are you ready for RealTalk MS??! ___________   Reporting Back from the MSIF People with MS Forum  :22

We Can Stop MS -- And This Is How  2:15

My Conversation with Dr. Laura Musambayi  9:19

My Conversation with Gabriela Hidalgo   18:03

Subscribe to RealTalk MS  28:47

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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!

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

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LINKS

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MS International Federation

We Can Stop Multiple Sclerosis -- And This Is How

Donate Online to the National MS Society

Donate Online to the UK MS Society's #StopMS Campaign

Multiple Sclerosis Association of Kenya

Esclerosis Multiple España 

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RealTalk MS Episode 112 Hosted By: Jon Strum Guests: Dr. Laura Musambayi and Gabriela Hidalgo

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, StopMS, mssocietyuk, MSIntFederation, MSAssocKe, Esclerosiseme, RealTalkMS

For almost 20 years, the CLIMB Study has been following thousands of MS patients, discovering so many aspects of multiple sclerosis and documenting how the disease changes over time. My guest is Dr. Tanuja Chitnis, Director of the CLIMB Study, Director of the Partners Pediatric Multiple Sclerosis Center at MassGeneral Hospital for Children, as well as the Director of the Translational Neuroimmunology Research Center at Brigham and Women's Hospital.      We're also talking about an emerging topic that will continue to grow in importance and impact -- aging and MS. We're taking a deep dive into new changes in Medicare and how these changes will affect people living with MS. We'll tell you about a study that's going to evaluate how different types of exercise impact specific MS symptoms. And if you're living with MS in Canada, we'll remind you of what you have to do before you vote next week.   We have a lot to talk about! Are you ready for RealTalk MS??! ___________   What I'll Be Talking About at the MSIF Forum  :22

Aging with MS  1:26

A Deep Dive Into New Improvements to Medicare & How They Will Affect People Living with MS  5:05

The MS Society of Canada's #MakeMSMatter Campaign   14:06

Studying Exercise & Its Effect on Specific MS Symptoms  15:14

My Interview with Dr. Tanuja Chitnis  17:55

Subscribe to RealTalk MS  29:46

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

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LINKS

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The CLIMB Study

MS Society of Canada's #MakeMSMatter Campaign

University of Washington Clinical Trial testing 2 non-pharmacological approaches to managing MS-related pain delivered via online video conference. Email: [email protected]  Phone: (855) 320-8230

Kessler Foundation MS Research

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RealTalk MS Episode 111 Hosted By: Jon Strum Guest: Dr. Tanuja Chitnis

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, KesslerFdn, MakeMSMatter, RealTalkMS

 

 

When you're living with MS, it can feel as though you're taking a few extra things with you when you go to work. For instance, if you haven't told your employer that you've been diagnosed with MS, you're taking along the extra burden of having to keep a secret. You might be trying your best to manage your MS symptoms on the job, dealing with things like fatigue, vision problems, and even physical balance. During the workday, all of these things -- these "extra burdens" -- get piled right on top of all the other work-related stresses that you face every day. It's a lot to have to carry.     My guest is Dr. Lauren Strober, a Senior Research Scientist at the Center for Neuropsychology & Neuroscience Research and a staff neuropsychologist at the Kessler Institute of Rehabilitation.  Among her research projects, Dr. Strober has taken a close look at how people living with MS cope with work-related stress.   We'll also take you through the dangers of surprise billing, and explain how you could end up with thousands of dollars in medical expenses that you never saw coming. We'll tell you about a couple of outstanding FREE events that you'll want to attend. You'll find out about the MS Society of Canada's #MakeMSMatter campaign. And Peer Baneke, the CEO of the MS International Federation will walk us through the newly announced Patient-Reported Outcomes Initiative for MS.   We have a lot to talk about! Are you ready for RealTalk MS??! ___________   This is the Danger of Surprise Billing  1:30

CEO of the MS International Federation, Peer Baneke, Discusses the Patient-Reported Outcomes Initiative for MS  6:51

The MS Summit in Chicago on 11/09  13:38

Music to Cure MS Concert in Boston on 10/27   14:54

The MS Society of Canada's #MakeMSMatter Campaign  16:39

My Interview with Dr. Lauren Strober  19:10

Subscribe to RealTalk MS  32:47

___________

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

___________

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

Kessler Foundation MS Research

Register to Attend the 2019 Multiple Sclerosis Summit

Music to Cure MS

Donate to the Accelerated Cure Project for MS

MS Society of Canada's #MakeMSMatter Campaign

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Download the RealTalk MS App for iOS

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RealTalk MS Episode 110 Hosted By: Jon Strum Guest: Dr. Lauren Strober

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, KesslerFdn, MakeMSMatter, AcceleratedCure, RealTalkMS

I imagine everyone involved in MS research has their own reasons that make it important to them. My guest this week is Dr. Anisha Doshi, and Dr. Doshi's reasons are personal and powerful. Dr. Doshi will also update us on her current research project, and we'll talk with Dr. Doshi about the path that women face as they pursue a career in Neurology.     You'll also hear Atara Biotherapeutics Chief Medical Officer Dr. AJ Joshi discuss Atara's clinical trial aimed at mitigating MS by using lab-engineered T-cells to attack B-cells carrying the Epstein-Barr Virus.   We'll tell you about another newly announced clinical trial that's designed to see whether a probiotic will alter your gut bacteria so that it impacts your immune system and helps manage MS. And we'll share the results of the Global vsMS™ Survey of over 1,000 people living with MS.   We have a lot to talk about! Are you ready for RealTalk MS??! ___________   National MS Society's Houston On The Move Luncheon Recap  :22

Where I'll Be in October  1:46

ExeGi Pharma Launches Clinical Trial Testing Probiotic  4:04

Global vsMS™ Survey Results Announced   5:41

Atara Biotherapeutics' Chief Medical Officer, Dr. AJ Joshi, Discusses Their Cell Therapy Designed to Impact MS By Attacking the Epstein-Barr Virus  8:14

My Interview with Dr. Anisha Doshi  16:22

Subscribe to RealTalk MS  25:59

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

___________

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

Multiple Sclerosis Impact on Daily Activities, Emotional Well-Being, and Relationships: The Global vsMS™ Survey

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RealTalk MS Episode 109 Hosted By: Jon Strum Guest: Dr. Anisha Doshi

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

Sometimes, you can just look at someone and know how they're feeling. Our ability to "read people" is called social cognition. And we're learning that people living with MS can lose their social cognition skills, making every face-to-face interaction more difficult. My guest is Dr. Helen Genova, the Assistant Director of the Kessler Foundation's Center for Neuropsychology and Neuroscience Research, the Director of the Social Cognition and Neuroscience Laboratory at the Kessler Foundation, and an expert in social cognition.       Today is National Voter Registration Day, and we'll remind you about why that should be important to everyone affected by MS or any other chronic illness. We're talking about why the FTC is clamping down on the claims that some companies are making about their CBD products. We'll tell you about the $19 million dollars that J.K. Rowling donated to MS research. And we'll let you know where to sign up for this Thursday's Pathways to a Cure Facebook Live event.   We have a lot to talk about! Are you ready for RealTalk MS??! ___________   It's Our Birthday!  :30

Give RealTalk MS a Rating & Review  1:35

Today is National Voter Registration Day & Why That's Important if You're Living with MS  2:40

FTC Clamps Down on CBD Claims   5:55

J.K. Rowling Donates $19 Million to MS Research  9:00

Register for MS Society's Pathways to a Cure Facebook Live   10:04

My Interview with Dr. Helen Genova  10:58

___________

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

___________

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

Give RealTalk MS a Rating & Review 

National Voter Registration Day: Register To Vote

Pathways to a Cure Facebook Live Event Registration

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Download the RealTalk MS App for Android

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RealTalk MS Episode 108 Hosted By: Jon Strum Guest: Dr. Helen Genova

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, KesslerFdn, MSActivist, jk_rowling, RealTalkMS

Being diagnosed with multiple sclerosis means learning to live with a whole new set of challenges. Rising to meet those challenges and learning how to thrive in spite of those challenges is called resilience. But resilience isn't something that you're necessarily born with. Just like a muscle, resilience is something that you can choose to develop. My guest, Dr. Brandon Beaber, specializes in treating people living with MS and he's the author of Resilience in the Face of Multiple Sclerosis, a book that profiles some of his patients who have demonstrated great resilience in the face of MS  and provides evidence-based tools on how you can develop your personal resilience. I see it as a how-to guide for living better with MS. And we'll tell you how you can get your free copy!       We're also talking about why National Voter Registration Day should be important to everyone affected by MS or any other chronic illness. And we'll tell you where to sign up for the MS Society's upcoming Facebook Live workshop.   We have a lot to talk about! Are you ready for RealTalk MS??! ___________   The Progressive MS Alliance at the Ambassadors Ball  :22

Daily Updates from ECTRIMS are Available for Binge-Listening  1:24

Presenting the Case for Adopting the Caregiver Protocol at Stanford Medicine X   1:53

National Voter Registration Day is 9/24...Why That's Important if You're Living with MS  5:26

Register for MS Society's Pathways to a Cure Facebook Live   7:02

Resilience In the Face of Multiple Sclerosis: My Interview with Author Dr. Brandon Beaber  8:16

Subscribe to RealTalk MS or Just Ask Alexa  22:34

___________

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

___________

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

Get Your Free Copy of Resilience in the Face of Multiple Sclerosis by Tweeting Your Request to Dr. Brandon Beaber -- @Brandon_Beaber

Give RealTalk MS a Rating & Review 

ECTRIMS 2019 Day 1 Update

ECTRIMS 2019 Day 2 Update

ECTRIMS 2019 Day 3 Update

Stanford Medicine X

National Voter Registration Day: Register To Vote

Join the National MS Society's MS Activist Network

Pathways to a Cure Facebook Live Event Registration

Give RealTalk MS a Rating & Review 

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

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RealTalk MS Episode 107 Hosted By: Jon Strum Guest: Dr. Brandon Beaber

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, ECTRIMS2019, Brandon_Beaber, RealTalkMS

Welcome to a special episode of RealTalk MS coming to you from Day Three of ECTRIMS 2019 in Stockholm, Sweden. This final day at ECTRIMS has become my favorite day of the conference because it's the day that I get to sit down with Dr. Bruce Bebo, the Executive Vice President of Research at the National MS Society, and get his perspective on the highlights of the entire conference. We're talking about new Phase 3 clinical trial outcomes, research that shows that lifestyle choices can impact the course and severity of MS, the importance of beginning disease-modifying therapy within 5 years of being diagnosed with MS, and how artificial intelligence is ushering in the age of personalized medicine.   We have a lot to talk about. Welcome to ECTRIMS 2019!

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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

Give RealTalk MS a Rating & Review 

ECTRIMS 2019 Scientific Programme

Download the RealTalk MS App for iOS

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RealTalk MS ECTRIMS Day 3 Hosted By: Jon StrumGuest:        Dr. Bruce Bebo

Tags: MS, MultipleSclerosis, MSsociety, ECTRIMS2019, EMDSerono, RealTalkMS

Welcome to a special episode of RealTalk MS coming to you from Day Two of ECTRIMS 2019 in Stockholm, Sweden. ECTRIMS is an acronym that stands for the European Conference for Treatment & Research in Multiple Sclerosis, and this annual scientific congress is the largest MS research conference in the world. There are over 9,000 attendees here from more than 100 different countries to share new information, hear research updates, and get face to face with the leading MS researchers in the world.  We're talking about stem cell therapy, the long-term outcomes of MS, new data about Ocrevus, the importance of managing comorbidities, and a new global initiative that puts the voice of people living with MS at the center of MS research and MS care.   We have a lot to talk about. Welcome to ECTRIMS 2019!

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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

Give RealTalk MS a Rating & Review 

ECTRIMS 2019 Scientific Programme

Download the RealTalk MS App for iOS

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RealTalk MS ECTRIMS Day 2 Hosted By: Jon Strum

Tags: MS, MultipleSclerosis, ECTRIMS2019, EMDSerono, Stemcells, PROMS, RealTalkMS

Welcome to a special episode of RealTalk MS coming to you from ECTRIMS 2019 in Stockholm, Sweden. ECTRIMS is an acronym that stands for the European Conference for Treatment & Research in Multiple Sclerosis, and this annual scientific congress is the largest MS research conference in the world. There are over 9,000 attendees here from more than 100 different countries to share new information, hear research updates, and get face to face with the leading MS researchers in the world.  We're talking about some of the announcements that we expect to hear from some of the pharmaceutical companies in attendance. And we'll also tell you about a session that you'll be able to catch on a live webcast tomorrow morning.   We have a lot to talk about. Welcome to ECTRIMS 2019!

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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

Give RealTalk MS a Rating & Review 

ECTRIMS 2019 Scientific Programme

Live Webcast from ECTRIMS Tomorrow, 5:45 AM EST

 

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RealTalk MS ECTRIMS Day 1 Hosted By: Jon Strum

Tags: MS, MultipleSclerosis, ECTRIMS2019, EMDSerono, Roche, BrainstormCell, RealTalkMS

This week, we're talking about palliative care for MS. It's a topic that a lot of people living with MS still don't know enough about, but palliative care can offer real benefits in attaining the best overall quality of life.

Joining me in discussing palliative care is my guest, Cherie Binns. Cherie was diagnosed with relapsing-remitting MS in 1994. She's been a Registered Nurse for 45 years, and Cherie is also an Internationally Certified MS Nurse. Cherie serves as the co-chair of the iConquerMS Research committee, and she regularly presents programs on living well with MS. 

We'll also remind you that beginning tomorrow, you can listen to daily episodes of RealTalk MS directly from ECTRIMS 2019 in Stockholm, Sweden. I'll do my best to keep you updated on the announcements being made, the presentations being given, and the news coming out of the largest MS research conference in the world. We'll even tell you how you can catch a couple of sessions that will be webcast live from ECTRIMS 2019.

We have a lot to talk about! Are you ready for RealTalk MS??! ___________   The Ambassadors Ball Is Happening Tonight!  :22

Beginning Tomorrow: Special RealTalk MS Episodes from ECTRIMS 2019   1:26

Catch Sessions from ECTRIMS on the Live Webcast   1:57

Palliative Care for MS with Cherie Binns, RN, MSCN  3:09

Download the RealTalk MS App  23:16

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

___________

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

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Live Webcasts from ECTRIMS 2019

National MS Society MS Navigators

GetPalliativeCare.org

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RealTalk MS Episode 106 Hosted By: Jon Strum Guest: Cherie Binns, RN, MSCN

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, PalliativeCare, ECTRIMS2019, RealTalkMS