RealTalk MS

Access to MS symptom self-management care is extremely limited. That's why my guest, Dr. Anna Kratz, and her colleagues created My MS Toolkit -- a web-based, self-guided symptom self-care program designed especially for people with MS. (And it's FREE!)

We're talking with Dr. Kratz about how My MS Toolkit was developed and what makes it such a powerful online tool for people living with MS.

We're also talking about the latest petitions filed with the Supreme Court in the battle over the Affordable Care Act (and why this is so vitally important to people affected by MS!). If you're using gabapentin (Neurontin) to manage MS pain, we'll tell you about the warning that was just issued by the FDA.

Yet another study gives us yet another reason to start disease-modifying therapy as soon as possible. And we'll explain why collecting real-world data about MS is so important, and what a team of MS experts is recommending to improve the process of real-world data collection and analysis.

We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Where I'll Be in January :27

National MS Society Joins 23 Other Patient Organizations in Requesting Supreme Court Expedites Its Review of the ACA 3:00

FDA Issues Warning About Gabapentinoids 6:51

Disease-Modifying Therapy Use Has Changed the 'Natural History' of Relapsing-Remitting MS 7:57

Paper Explores How Real-World Data Can Be Better Leveraged to Speed Solutions to People Living with MS 9:34

My Interview with Dr. Anna Kratz 15:04

Share This Episode 36:00

Download the RealTalk MS App 36:29

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Just copy this link & paste it into your text or email: http://realtalkms.com/123

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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

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

My MS Toolkit

FDA Warns About Serious Breathing Problems when Gabapentin and Pregabalin Are Used With CNS Depressants or By Patients with Lung Problems

STUDY: Outcomes in a Modern Cohort of Treated Multiple Sclerosis Patients Followed from Diagnosis Up to 15 Years

Leveraging Real-World Data to Investigate Multiple Sclerosis Disease Behavior, Prognosis, and Treatment

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RealTalk MS Episode 123 Hosted By: Jon Strum Guests: Dr. Anna Kratz

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

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MS Warriors are those special individuals whose efforts on behalf of people affected by MS go above and beyond the norm to raise awareness, raise funds, and raise our spirits My guest this week is Marc Boyer. Marc biked more than 4,000 miles, from one end of Canada to the other, raising over $160,000 for the MS Society of Canada. Marc not only raised money that will fund important MS research, his coast-to-coast ride also raised MS awareness throughout Canada.

We're also taking a look back at the MS-related legislative wins, losses, and draws that we faced in 2019. We're talking about gains in federal funding for MS research, first steps in trying to get a handle on the escalating cost of MS prescription medications, and some political outcomes that didn't go well for people living with MS and other chronic illnesses.

We have a lot to talk about! Are you ready for this holiday edition of RealTalk MS??! ___________ MS Advocacy: A 2019 Legislative Review 1:16

My Interview with Marc Boyer 19:56

Share This Episode 33:23

Download the RealTalk MS App 33:51

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SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: http://realtalkms.com/122

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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

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

See How Your U.S. Representative Voted for the Defense Bill (which included the MS Research Program funding)

See How Your U.S. Senators voted for the Defense Bill (which included the MS Research Program funding)

See How Your U.S. Representative Voted for the Health & Human Services Bill (which included all other funding for MS-related research and programs)

See How Your U.S. Senators voted for the Health & Human Services Bill (which included all other funding for MS-related research and programs)

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RealTalk MS Episode 122 Hosted By: Jon Strum Guests: Marc Boyer

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

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In this episode of RealTalk MS, we're re-visiting my conversation from ECTRIMS 2019 with Dr. Bruce Bebo, the Executive Vice-President of Research at the National MS Society. This is one of my favorite conversations of the entire year, and you've made it this year's most downloaded and listened to RealTalk MS episode.

We're also talking about a new report issued by RAND Europe, entitled Exploring the Societal Burden of Multiple Sclerosis: A Study Into the Non-Clinical Impact of the Disease, Including Changes with Progression. And if you have the RealTalk MS app installed on your iOS or Android smartphone or tablet (you'll find links below), you're going to receive this special report as Bonus Content.

We have a lot to talk about! Are you ready for this holiday edition of RealTalk MS??! ___________ Season's Greetings! :18

RAND Europe Report: Exploring the Societal Burden of Multiple Sclerosis :42

Dr. Bruce Bebo's Highlights of ECTRIMS 2019 3:03

Share This Episode 27:52

How to Download the RealTalk MS App 28:16

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SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: http://realtalkms.com/121

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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

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

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Give RealTalk MS a Rating & Review

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RealTalk MS Episode 121 Hosted By: Jon Strum Guests: Dr. Bruce Bebo

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

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Is MS preventable? Is progressive MS modifiable? We'll tackle these questions and more with my guest, Professor Gavin Giovannoni. Professor Giovannoni is not only a leading academic neurologist based at Barts and The London School of Medicine and Dentistry, Queen Mary University London, he's also a prolific blogger, tweeter, speaker, author, and opinion leader. It's a conversation you don't want to miss!

We're also taking a look back at the major MS news stories of 2019. We're talking about new disease-modifying therapies, stem cell therapy (both the legitimate and the less-than-legitimate variety), MS biomarkers, the skyrocketing cost of MS prescription medications (and what's being done about it), the nearly one million families living with MS in the United States, and more! We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Thank you! We're Trending On Apple Podcasts :22

A Look Back at the MS News of 2019 2:18

My Interview with Prof. Gavin Giovannoni 15:01

Share This Episode 37:16

Why You Should Download the RealTalk MS App This Week 37:44

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SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: http://realtalkms.com/120

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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

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

MS Brain Health

BARTS MS Blog

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RealTalk MS Episode 120 Hosted By: Jon Strum Guests: Prof. Gavin Giovannoni

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

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This episode is sponsored by Celgene and the MS MindShift Initiative, which aims to educate about the important role the brain plays in MS.

My guest is Cathy Chester, who is a paid spokesperson for the MS MindShift. Cathy has lived with relapsing-remitting multiple sclerosis since 1986 and knows that although she has MS, MS does not have her. Today, Cathy hopes to empower, educate and inspire others to live a rich, full life despite living with a disability.

We'll be talking to Cathy about how your brain health may be impacting your relationships as well as advice on how to have meaningful relationships while balancing symptoms of MS. We'll also talk about the importance of brain health and share some lifestyle tips on what people living with MS can do to keep their brain healthy.

To learn more about the brain's role in MS and the lifestyle choices you can make to help keep your brain as healthy as possible for as long as possible, visit www.MSMindShift.com

What can you do when the MS medication you need can cost $80,000, $90,000 or even $100,000 a year, and you don't have health insurance? Or you have health insurance, but your insurance company won't approve the specific disease-modifying therapy that your neurologist thinks will be best for you?

My guest is Lisa Aquillano, a Clinical Pharmacy Specialist in Multiple Sclerosis at Emory University Hospital in Atlanta, Georgia. And we're talking about specific steps that you can take to overcome the obstacles standing in the way of gaining access to your MS disease-modifying therapy.

We're also talking about a remarkable program for people living with MS and their care partners. But the window to register for this program is just 24 hours long! And it's coming up in 2 days! We'll tell you all about the program and let you know exactly how to register. We'll tell you about what may be an important new discovery of a molecule that completely resolves MS in mice. We'll also tell you about a study that shows that people living with MS who are also dealing with depression are much more likely to develop debilitating disability sooner. And we'll tell you how and why Google is cracking down on shady stem cell clinic ads. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ CAN-DO Program: 24-Hour Registration Opens Dec. 12 2:15

MicroRNA Resolves Mouse Model of MS 5:39

FDA Approves 3 Generics for Gilenya 8:06

Depressed MS Patients Suffer More Serious Physical Disability Earlier 9:39

Google Cracks Down on Stem Cell Clinic Ads 12:25

My Interview with Lisa Aquillano 14:48

Share This Episode 32:19

How to Subscribe to RealTalk MS, Download the RealTalk MS App, and Listen with Alexa 32:43

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SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: http://realtalkms.com/119

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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

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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The Can-Do Program

STUDY: Oral Administration of miR-30d from Feces of MS Patients Suppresses MS-Like Symptoms in Mice By Expanding Akkermansia Muciniphila

STUDY: Diability Worsening Among Persons with Multiple Sclerosis and Depression: A Swedish Cohort Study

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RealTalk MS Episode 119 Hosted By: Jon Strum Guests: Lisa Aquillano, PharmD, BCPS, MSCS

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, CanDoMS, Gilenya, Depression, Stemcells, RealTalkMS

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This episode is sponsored by Celgene and the MS MindShift Initiative, which aims to educate about the important role the brain plays in MS.

My guest is Jodi Johnson, who is a paid spokesperson for the MS MindShift. Jodi has been living with MS for almost 12 years after having been diagnosed in January of 2008. Since her diagnosis, Jodi has shifted her perspective on the disease to focus on what she can do, instead of what she cannot.

We'll be talking to Jodi about coping with MS through personal growth and resilience and how different lifestyle choices can have an impact on brain health. She'll also give us a look into her daily lifestyle routine which helps keep her brain healthy.

To learn more about the brain's role in MS and the lifestyle choices you can make to help keep your brain as healthy as possible for as long as possible, visit www.MSMindShift.com

My guest is Stubhy Pandav, the lead singer of Lucky Boys Confusion and The Hoodie Life. Last year, Stubhy was diagnosed with MS. Then, Stubhy's insurance company told him that he couldn't start the disease-modifying therapy that his neurologist had prescribed. We'll talk with Stubhy about how he's managed to navigate this first year since his MS diagnosis, and we'll also talk with him about MS Sucks: Singing for a Cure, a benefit concert that's raising funds for the Accelerated Cure Project for MS. We're also talking about the warning that the FDA just issued about CBD. And we'll tell you why two Harvard neurologists have announced that it's time to re-think how neurologists treat MS. If you've wondered why the cost of MS medications seems to be constantly rising, we'll tell you what a research team from Oregon State University discovered. And we'll tell you where you can sign up for the upcoming webinar, "Debunking Diet Myths." We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Home for the Holidays :22

FDA Issues Warning About CBD 2:29

Harvard Neurologists Say It's Time to Re-Think MS Treatment Approach 5:39

What Really Drives Up the Price of MS Medications? 8:29

Webinar: Debunking Diet Myths 13:12

My Interview with Stubhy Pandav 14:48

Share This Episode 31:46

How to Subscribe to RealTalk MS, Download the RealTalk MS App, and Listen with Alexa 32:12

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SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/118

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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

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

MS Sucks: Singing For a Cure

RealTalk MS Episode 74: Dr. Aaron Boster & The Induction vs Escalation MS Treatment Philosophy

An Argument for Broad Use of High Efficacy Treatments in Early Multiple Sclerosis

Qualitative Study on the Price of Drugs for Multiple Sclerosis: Gaming the System

Can-Do MS & National MS Society Webinar Registration: Debunking Diet Myths

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RealTalk MS Episode 118 Hosted By: Jon Strum Guests: Stubhy Pandav

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, CBD, Cannabis, RealTalkMS

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November is National Family Caregiver Month, and while I was at the 4th Annual National Caregiving Conference in Chicago, I met this week's guest, Caregiver Strategist Penny Patnaude. Penny and I talked about some of the things that caregivers want to be thinking about in planning their own strategy for providing great care to their loved one without losing themselves in the process. I'll also introduce you to Dr. Lindsey Knowles, a young MS rehabilitation researcher who will give us an insider's look at what the Tykeson Fellows Conference is all about, and why it's so important for the future of MS research. We're also talking about the cannabis-based treatment for MS spasticity that was approved in the U.K. You'll hear about last week's International Progressive MS Alliance meeting in Amsterdam, and we'll tell you about an investigational therapy that can reset the immune system in the mouse model of MS in a single dose. We'll remind you that if you're a young adult, between 18 and 45 years old, First Descents is offering you a week-long ski trip to Crested Butte, Colorado. And it's FREE! (Don't worry, we'll tell you how and where to begin the application process!) You'll hear about the research team in Montreal that may have found a way to stop MS progression. And we'll tell you how easy it is to share this episode of RealTalk MS with family and friends! We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Thanks for all the kind words! :22

The National MS Society & RealTalk MS Partnership :52

Join the Conversation! Get In Touch with RealTalk MS 2:21

The Progressive MS Alliance Meeting in Amsterdam 3:32

The Tykeson Fellows Conference & My Conversation with Dr. Lindsey Knowles 5:26

Sativex Approved in U.K. for MS Spasticity 11:12

Single Dose of Investigational Therapy Resets the Immune System in Mouse-Model of MS 13:19

First Descents Offers a FREE Ski Trip to Crested Butte to Young Adults Living with MS 15:39

Canadian Research Team Says They May Be Able to Stop MS Progression 17:51

My Interview with Caregiver Strategist Penny Patnaude 19:51

Share This Episode 27:11

How to Subscribe to RealTalk MS, Download the RealTalk MS App, or Listen with Alexa 27:36

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Just copy this link & paste it into your text or email: https://realtalkms.com/117

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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

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

The National MS Society & RealTalk MS Announce a Partnership

The International Progressive MS Alliance

Administration of a CD45 Antibody Drug Conjugate as a Novel, Targeted Approach to Achieve Immune System Reset: A Single Dose of CD45-targeted ADC Safely Conditions for Autologous Transplant and Ameliorates Disease in Multiple Models of Immune Disease

First Descents Skiing at Crested Butte

Activated Leukocyte Cell Adhesion Molecule Regulates B Lymphocyte Migration Across Central Nervous System Barriers

The Caregiver Strategist

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RealTalk MS Episode 117 Hosted By: Jon Strum Guests: Penny Patnaude

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Caregiving, Sativex, Stemcells, FirstDescents, RealTalkMS

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This episode is sponsored by Celgene and the MS MindShift Initiative, which aims to educate about the important role the brain plays in MS.

My guest is Caroline Craven, who is a paid spokesperson for the MS MindShift. Caroline could not walk or see without assistance when she was first diagnosed with multiple sclerosis in 2001. Today she is thriving and shares her personal experiences, life hacks, and the holistic lifestyle choices that she has made to help manage her MS symptoms, via her blog.

We'll be discussing how Caroline pursues positivity and her personal passions while living with MS, in order to keep her brain active and engaged. We'll also be discussing the lifestyle choices she has made to help maintain her brain health.

To learn more about the brain's role in MS and the lifestyle choices you can make to help keep your brain as healthy as possible for as long as possible, visit www.MSMindShift.com.