RealTalk MS

Joining me this week is Brett Drummond, a scientist in Australia who stepped away from his lab to develop an online resource designed to bridge the gap between the MS patient community and the MS research community. The result of his efforts is MSTranslate. We're talking about this excellent curated MS information resource, and Brett even shares some insights into the MS research that he finds particularly exciting. We're also talking about the research team that used human stem cells to create myelin-producing cells in a lab dish in just 3 weeks. We'll tell you what a University of Washington Rehabilitation Medicine research team learned when they surveyed people living with MS about their level of distress during the first surge of the COVID-19 pandemic. Wouldn't it be convenient if MS progression could be measured by analyzing how you type on your smartphone? We'll tell you about the study that asked that question. We'll also share new discoveries from the Avonex clinical trial that show MS-related brain atrophy can be predicted 10 years before it occurs. And as we approach Thanksgiving in the U.S., we're sharing the things that we're thankful for this year. We have a lot to talk about! Are you ready for RealTalk MS??!

Being thankful in 2020 :22

Myelin-producing cells created in a lab dish in 3 weeks 5:43

UW Rehabilitation Medicine surveyed people living with MS on their feelings of distress & risk perception in the early phase of the COVID-19 pandemic 6:57

Measuring MS progression by typing on your smartphone 9:06

Study shows neurofilament light chain level at the first MS episode predicts future brain atrophy 10:43

My interview with Brett Drummond 14:54

Share this episode 37:13

Donate to the National MS Society COVID-19 Response Fund 37:34

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Just copy this link & paste it into your text or email: https://realtalkms.com/169

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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

And don't forget to join us in the RealTalk MS Facebook group!

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 and Review

National MS Society's Ask An MS Expert Video Replay

What You Need to Know About Coronavirus (COVID-19)

MSTranslate

STUDY: Generation of Oligodendrocytes and Establishment of an All-Human Myelinating Platform for Human Pluripotent Stem Cells

STUDY: Distress and Risk Perception in People Living With Multiple Sclerosis During the Early Phase of the COVID-19 Pandemic

STUDY: Early-Warning Signals for Disease Activity in Patients Diagnosed with Multiple Sclerosis Based on Keystroke Dynamics

STUDY: Association of Serum Neurofilament Light Levels with Long-Term Brain Atrophy in Patients With a First Multiple Sclerosis Episode

National MS Society COVID-19 Response Fund

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RealTalk MS Episode 169 Guests: Brett Drummond

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

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Today, remyelination holds real promise as a strategy for restoring lost function and slowing or even stopping MS progression. This week, we're taking a deep dive into the current state of remyelination research.

Joining me are Dr. Jeffrey Cohen, the Hazel Prior Hostetler Professor of Neurology at the Cleveland Clinic and the director of the Cleveland Clinic's Mellen Center for Multiple Sclerosis Treatment and Research, and Dr. Ian Duncan, a neuroscientist, and Professor of Neurology at the University of Wisconsin-Madison and the recipient of the 2020 Dystel Prize for MS Research. We're also talking about the publication of the Atlas of MS, the most extensive global MS prevalence study to date. And we're even including a copy of the published study as bonus content in the RealTalk MS app! We're sharing an excellent explanation of comorbidities in MS by Dr. Ruth Ann Marrie. And we're sharing some news about Dr. Marrie, as well. The European MS Platform's annual conference begins Thursday. This year, the theme is Understanding Progressive MS. We'll tell you how and where to register for this free virtual event. And we'll remind you where you can register for next week's virtual 2020 MS-CONNECT conference, hosted by the MS Society of Canada. We have a lot to talk about! Are you ready for RealTalk MS??!

Veterans with MS are eligible to join the PVA :22

The largest MS prevalence study to date has been published. And it's yours in the RealTalk MS app! 3:26

Dr. Ruth Ann Marie on comorbidities in MS 4:29

European MS Platform Annual Conference: Understanding Progressive MS begins Thursday 5:56

MS Society of Canada 2020 MS-CONNECT Conference begins next Monday 6:56

Dr. Jeffrey Cohen talks about remyelination 9:13

Dr. Ian Duncan talks about the science behind remyelination 21:48

Share this episode 31:31

Donate to the National MS Society COVID-19 Response Fund 31:52

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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

And don't forget to join us in the RealTalk MS Facebook group!

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 and Review

National MS Society's Ask An MS Expert Video Replay

What You Need to Know About Coronavirus (COVID-19)

Paralyzed Veterans Of America

VIDEO: Dr. Ruth Ann Marrie on comorbidities in MS

Register for the European MS Platform Annual Conference: Understanding Progressive Multiple Sclerosis

Register for the MS Society of Canada's 2020 MS-CONNECT Conference

National MS Society COVID-19 Response Fund

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RealTalk MS Episode 168 Guests: Dr. Jeffrey Cohen, Dr. Ian Duncan

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, EMSPVirtual2020, MSConnect, RealTalkMS

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November 11 is Veterans Day in the United States, giving us an opportunity to honor the men and women who have served in America's armed forces. More than 70,000 U.S. veterans are living with MS, and joining me on the podcast is Karla Clay, an Air Force veteran, and a National Veterans Wheelchair Games multiple medal winner. We're talking about the life-changing turn that Karla's MS journey ended up taking.

As of today, the fate of the Affordable Care Act and the legal protections for people with pre-existing conditions are in the hands of the Supreme Court. So we're also talking about The 100 Days Agenda: A Patient-First Blueprint. This document is the result of a collaboration between the National MS Society and 33 other patient organizations and it provides specific steps that the President and other elected officials can take to protect access to adequate, affordable insurance coverage for people with pre-existing conditions. We'll tell you about a study that identifies a potential new risk associated with disease-modifying therapies for people living with MS who are over the age of 45. And the month of November is loaded with outstanding webinars and conferences featuring some of the leading MS experts in the world. The good news is that you can virtually attend all of these online events at no charge, from the comfort of your own home. We're sharing all the details and we'll tell you where to register for each one! We have a lot to talk about! Are you ready for RealTalk MS??!

As of today, the legal protections for people with pre-existing conditions is in the hands of the U.S. Supreme Court :22

National MS Society and 33 other patient organizations publish The 100 Days Agenda: A Patient-First Blueprint 2:25

Study identifies a potential new DMT risk for people living with MS who are over the age of 45 3:34

November is loaded with outstanding webinars and conferences that you can attend virtually...for FREE! 5:04

International Progressive MS Alliance Global Webcast: Speeding Life-Changing Treatments for Progressive MS 5:25

National Alliance for Caregiving and the Rosalynn Carter Institute for Caregiving webinar: Flattening the Caregiver Crisis Curve 5:57

European MS Platform Annual Conference: Understanding Progressive MS 7:52

MS Society of Canada 2020 MS-CONNECT Conference 8:48

My Interview with Karla Clay, Capt USAF (Ret) 9:41

Share this episode 31:09

Donate to the National MS Society COVID-19 Response Fund 31:28

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Just copy this link & paste it into your text or email: https://realtalkms.com/167

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

And don't forget to join us in the RealTalk MS Facebook group!

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 and Review

National MS Society's Ask An MS Expert Video Replay

What You Need to Know About Coronavirus (COVID-19)

National Veterans Wheelchair Games

Paralyzed Veterans Of America

U.S. Department of Veterans Affairs Multiple Sclerosis Centers Of Excellence

The 100 Days Agenda: A Patient-First Blueprint

STUDY: Age-Related Adverse Events of Disease-Modifying Treatments for Multiple Sclerosis: A Meta-Regression

Register for the International Progressive MS Alliance Global Webcast: Speeding Life-Changing Treatments for Progressive MS

Register for Flattening the Caregiver Crisis Curve

Register for the European MS Platform Annual Conference: Understanding Progressive Multiple Sclerosis

Register for the MS Society of Canada's 2020 MS-CONNECT Conference

National MS Society COVID-19 Response Fund

Join the RealTalk MS Facebook Group

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Give RealTalk MS a Rating and Review

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

RealTalk MS Episode 167 Guests: Karla Clay, Capt USAF (Ret)

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, VeteransDay, EMSPVirtual2020, MSConnect, Caregiving, RealTalkMS

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Fatigue is considered to be the most common MS symptom and also one of the most disabling because fatigue can interfere with every aspect of someone's life -- at home, at work, in their relationships -- in every way, fatigue can have a profound impact on your quality of life. We're talking about how to best manage MS-related fatigue with two experts on the subject, Dr. Bardia Nourbakhsh, and Dr. Kathy Zackowski. Remembering Karen Jackson We're also remembering Karen Jackson, an MS activist, tireless advocate, a supporter of people-powered research, friend to this podcast, and a special person who we were lucky to know. We're also talking about the National MS Society's first recommendation for stem cell therapy as a treatment for MS. This recommendation comes with some important caveats and we'll cover them all. We'll share some very disturbing survey results that reveal widespread mistreatment of MS patients by their family caregivers. And we'll tell you what we're doing about it. If you're an adult living with MS, we'll share the details of an opportunity for you to participate in a clinical trial from the comfort of your own home, as researchers study the health benefits of tele-exercise. And you'll meet a true difference-maker in the MS community when you meet Cristina Antelo, who submitted the winning bid in a fundraising auction for the National MS Society. And the item that Cristina bid on was.....this interview! We have a lot to talk about! Are you ready for RealTalk MS??!

Remembering Karen Jackson :22

National MS Society issues a recommendation for stem cell therapy 4:05

NARCOMS survey uncovers widespread mistreatment of MS patients by their caregivers 8:34

Adults with MS wanted for tele-exercise clinical trial 13:08

My Interview with Dr. Bardia Nourbakhsh & Dr. Kathy Zackowski 14:44

My Interview with Cristina Antelo 31:23

Share this episode 44:21

Donate to the National MS Society COVID-19 Response Fund 44:44

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/166

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

And don't forget to join us in the RealTalk MS Facebook group!

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 and Review

National MS Society's Ask An MS Expert Video Replay

What You Need to Know About Coronavirus (COVID-19)

Autologous Hematopoietic Stem Cell Transplant in Multiple Sclerosis: Recommendations of the National Multiple Sclerosis Society

SURVEY: Abuse and Neglect of People with Multiple Sclerosis: A Survey with the North American Research Committee on Multiple Sclerosis (NARCOMS)

To Participate in the Tele-Health Study Contact Amy Bialek at Burke Neurological Institute Phone: (914) 597-2347 Email: [email protected]

National MS Society COVID-19 Response Fund

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RealTalk MS Episode 166 Guests: Dr. Bardia Nourbakhsh, Dr. Kathy Zackowski, and Cristina Antelo

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

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Almost everything that we've learned about multiple sclerosis is the result of people with MS choosing to participate in clinical research. When it comes to MS and most every other chronic illness, clinical research is the common denominator of all medical progress. This week, we're breaking down the details of MS clinical research with my guests, Dr. Sandi Cassard, a research associate in the Neurology department at Johns Hopkins School of Medicine, and Diane Kramer, who has participated in more than 20 research studies since being diagnosed with MS in 2010. After analyzing COVID-19 MS patient registries and studies from countries around the world, the MS International Federation has issued updated COVID-19 guidance for people living with MS. We'll tell you about it -- and if you've downloaded the RealTalk MS app from the Apple App Store or Google Play, you'll receive your own copy of this detailed guidance under the Bonus Content tab! We also have some final words before election day to share with our listeners in the U.S. And they're not even our words! We'll share the results of a study that may offer a clue as to why African-Americans with MS are likely to experience more relapses, greater disability, and often require mobility assistance earlier in their disease course when compared to Caucasians with MS. You'll also hear about an MRI study that shows Hispanics with MS are at a higher risk for developing more aggressive forms of MS at an earlier age when compared to Caucasians with MS. And you'll meet a true difference-maker when you meet Nightingale Award recipient and founder of MS Bright Spots of Hope, Michelle Keating. We have a lot to talk about! Are you ready for RealTalk MS??!

Have you checked out MSTranslate? 1:03

Healthcare is on the ballot! Have you voted yet??? 3:42

MSIF issues updated COVID-19 guidance for people living with MS 9:38

Researchers discover 2 gene variants that may help explain why African-Americans with MS often have a more severe disease course than Caucasians with MS 10:58

A study shows that Hispanics with MS are at a higher risk of developing more aggressive forms of MS at an earlier age. 12:44

My Interview with MS researcher Dr. Sandi Cassard and Diane Kramer 14:57

My Interview with Nightingale Award recipient and founder of MS Bright Spots of Hope Michelle Keating 24:08

Share this episode 35:52

Donate to the National MS Society COVID-19 Response Fund 36:12

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/165

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

And don't forget to join us in the RealTalk MS Facebook group!

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 and Review

National MS Society's Ask An MS Expert Video Replay

What You Need to Know About Coronavirus (COVID-19)

MSTranslate

MSIF Global COVID-19 Advisory for People with MS

STUDY: Two Genetic Variants Explain the Association of European Ancestry with Multiple Sclerosis Risk in African-Americans

UCSF Multiple Sclerosis Genetics Project

STUDY: Brain MRI Finds Hispanic Patients Develop More Aggressive MS

MS Bright Spots of Hope

National MS Society COVID-19 Response Fund

Join the RealTalk MS Facebook Group

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RealTalk MS Episode 165 Guests: Dr. Sandi Cassard, Diane Kramer, and Michelle Keating

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

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MS doesn't only affect individuals. It affects families. And that's probably most clear when we're talking about pediatric MS. The National MS Society estimates that there are about 5,000 diagnosed cases of pediatric MS in the United States and less than 10,000 cases worldwide, but those numbers become far less important when your child is one of those diagnosed cases. We're taking a deep dive into pediatric MS with Hannah Schnitzler, who lives with pediatric MS, Hannah's mom, Melissa Fisher, and pediatric MS expert Dr. Brenda Banwell. We're also talking about study results that show a simple sugar that's available over the counter is effective in preventing myelin degeneration in the mouse model of MS. And we'll tell you how a research team at the University of Chicago went about designing a novel MS therapy that's been demonstrated to promote myelin repair and even stop MS from developing in the mouse model of MS. You'll hear about the first oral disease-modifying therapy that's been approved to treat active secondary progressive MS in England, Wales, and Scotland. And we'll tell you how you can be a part of future MS research projects. We have a lot to talk about! Are you ready for RealTalk MS??!

Study shows an over-the-counter simple sugar promotes myelin repair in mouse model of MS 1:31

Researchers design a new MS therapy that reduces MS symptoms and even prevents MS from developing in mouse model of MS 3:15

Mayzent approved for treating secondary progressive MS in England, Wales, and Scotland 5:28

Register to participate in future research at the University of Washington MS Rehabilitation & Wellness Center 6:38

Online survey for parents of a child living with pediatric MS 8:02

My Interview with pediatric MS patient Hannah Schnitzler and her mom 9:22

My Interview with pediatric MS expert Dr. Brenda Banwell 21:57

Share this episode 42:00

Donate to the National MS Society COVID-19 Response Fund 42:21

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Just copy this link & paste it into your text or email: https://realtalkms.com/164

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

And don't forget to join us in the RealTalk MS Facebook group!

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 and Review

National MS Society's Ask An MS Expert Video Replay

What You Need to Know About Coronavirus (COVID-19)

STUDY: N-acetylglucosamine Drives Myelination By Triggering Oligodendrocyte Precursor Cell Differentiation

STUDY: Prolonged Residence of an Albumin-IL-4 Fusion Protein in Secondary Lymphoid Organs Ameliorates Experimental Autoimmune Encephalomyelitis

SURVEY: University of Washington Multiple Sclerosis Rehabilitation & Wellness Center Research Participant Survey

SURVEY: Parents of a Child with Pediatric MS (English)

SURVEY: Parents of a Child with Pediatric MS (Spanish)

National MS Society COVID-19 Response Fund

Join the RealTalk MS Facebook Group

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RealTalk MS Episode 164 Guests: Hannah Schnitzler, Melissa Fisher & Dr. Brenda Banwell

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

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The ECTRIMS (European Committee for Treatment & Research in MS) meeting is the largest MS research conference in the world. This year, of course, the ECTRIMS conference was virtual, and so was my conversation with Dr. Bruce Bebo, the Executive Vice President of Research at the National MS Society. Join us in this special episode of RealTalk MS as we take a deep dive into the research breakthroughs that will lead to treatments designed to stop MS progression, restore lost function, and end MS forever.

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

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/163

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

And don't forget to join us in the RealTalk MS Facebook group!

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 and Review

National MS Society COVID-19 Response Fund

Join the RealTalk MS Facebook Group

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

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RealTalk MS Episode 163 Guests: Dr. Bruce Bebo

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSVirtual2020, RealTalkMS

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We're in the midst of the fall MS conference season, and while all the conferences are virtual, there's still lots of news to share. This week, we're talking with EJ Levy, the Founder and President of MS Hope for a Cure, about Big October 2020. We're also talking about MS rehabilitation science with Dr. Kathy Zackowski, the Senior Director of Patient Management, Care, & Rehabilitation Research at the National Multiple Sclerosis Society. Our wide-ranging conversation includes updates from the 10th International Symposium on Gait & Balance in MS, rehabilitation for people living with progressive MS, and evidence-based best practices when it comes to the physical wellness, nutritional wellness, and emotional wellness of people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??!

It's MS research conference season! :22

Big October starts today :45

My interview with EJ Levy, the Founder & President of MS Hope for a Cure 2:13

Participate today in the National MS Society's Economic Impact Survey (and why it's so important!) 16:57

10th International Symposium on Gait & Balance in MS 18:48

My Interview with Dr. Kathy Zackowski 20:18

Share this episode 36:59

Donate to the National MS Society COVID-19 Response Fund 37:20

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/162

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

And don't forget to join us in the RealTalk MS Facebook group!

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 and Review

National MS Society's Ask An MS Expert Video Replay

What You Need to Know About Coronavirus (COVID-19)

Big October 2020

Health Behaviors, Wellness, and Multiple Sclerosis Amid COVID-19

National MS Society Survey: The Economic Impact of MS

National MS Society COVID-19 Response Fund

Join the RealTalk MS Facebook Group

Download the RealTalk MS App for iOS

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Give RealTalk MS a Rating and Review

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

RealTalk MS Episode 162 Guests: EJ Levy & Dr. Kathy Zackowski

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, BigOctober2020, RealTalkMS

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A lot of us may have to think back to a time before the pandemic to remember what it felt like to get a good night's sleep. But if you're someone living with MS, you might have to think back even further. Research tells us that more than half the people living with MS report significant disruptions in their sleep and difficulty maintaining a consistent sleep schedule. And that can lead to additional health issues along with an overall decline in quality of life and wellbeing. My guest is Dr. Katie Siengsukon, a physical therapist, Associate Professor, and Director of the Sleep, Health, and Wellness Lab at the University of Kansas Medical Center Department of Physical Therapy and Rehabilitation Science. We're talking about the importance of sleep to your overall health, how sleep problems affect MS, and the steps you can take if you're experiencing sleep problems. We're also talking about how the things that people affected by MS care most about really boil down to public policy decisions, making MS advocacy a critical element of this podcast. And while we're on the subject of advocacy, we're sharing our rant about a recently announced "healthcare plan" for the United States. You'll hear about what I'm calling a wellness roadmap for people living with MS. We'll give you the details of a newly-announced collaboration designed to produce a diagnostic test for a protein called neurofilament light chain -- and why that will be a game-changer for people living with MS. And we'll tell you about a clinical trial that will be starting soon for a therapy designed to reduce or eliminate MS disease activity by re-educating your immune system. We have a lot to talk about! Are you ready for RealTalk MS??!

Why it's always about MS advocacy 1:25

My rant about the "healthcare plan" that was just announced 5:00

Maintaining your physical, nutritional, and emotional wellness amid COVID-19 11:57

Here comes a diagnostic test for neurofilament light chain...and why it will be a game-changer for people living with MS 16:57

"Re-educating" your immune system. A Phase 1 clinical trial for ANK-700 begins soon 19:44

My Interview with Dr. Katie Siengsukon 22:17

Share this episode 34:44

Donate to the National MS Society COVID-19 Response Fund 35:07

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/161

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

And don't forget to join us in the RealTalk MS Facebook group!

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 and Review

National MS Society's Ask An MS Expert Video Replay

What You Need to Know About Coronavirus (COVID-19)

Vote.gov

Health Behaviors, Wellness, and Multiple Sclerosis Amid COVID-19

RealTalk MS Episode 142: New Guidelines for Exercise & Physical Activity from the National MS Society

RealTalk MS Episode 159: Building Resilience with Dr. Dawn Ehde

Anokion: What is Immune Tolerance?

National MS Society COVID-19 Response Fund

Join the RealTalk MS Facebook Group

Download the RealTalk MS App for iOS

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Give RealTalk MS a Rating and Review

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RealTalk MS Episode 161 Guests: Dr. Katie Siengsukon

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

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Of all the people living with MS, you might assume that people living with progressive MS have experienced the highest levels of anxiety and depression related to the threat of COVID-19. A research team found themselves at the right place at the right time -- conducting a different progressive MS study. They quickly pivoted to investigate the emotional impact of the COVID-19 pandemic on people living with progressive MS. My guest is Dr. Anthony Feinstein, a professor of psychiatry at the University of Toronto and a neuropsychiatrist. He is also the principal investigator of the CogEx study, and he's sharing the newly published results of his team's work. We're also talking about the importance of your vote in the upcoming U.S. election, and we'll help you check your voter registration and even register to vote. The National MS Society's Ambassadors Ball is happening on September 30. This year it's virtual and it's free. We'll tell you how you can attend. You'll hear the details of a study that revealed some sobering truths about the financial toxicity of MS. And we'll let you know how you can participate in the MS Society's survey of the economic impact of MS. We'll also give you a heads-up about how the slowdown in U.S. mail delivery may impact the delivery of your MS disease-modifying therapies. And we're talking about a study from Australia that demonstrates how engaging with credible health resources (Um...hello!) often leads to adopting a healthy lifestyle. We have a lot to talk about! Are you ready for RealTalk MS??!

Check out RealTalk MS on Amazon Music! :22

MSVirtual2020 -- there's more to come 1:17

Advocacy begins by casting your vote 3:49

Join me at the National MS Society's Ambassadors Ball 6:34

Measuring the financial toxicity of MS 8:43

You can participate in the National MS Society's survey of the economic impact of MS 10:36

Mail delivery delays = disease-modifying therapy delays 12:01

Survey shows that people who engage with health resources adopt a healthy lifestyle 13:30

My Interview with Dr. Anthony Feinstein 16:03

Share this episode 22:21

Donate to the National MS Society COVID-19 Response Fund 22:42

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LINKS

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National MS Society's Ask An MS Expert Video Replay

What You Need to Know About Coronavirus (COVID-19)

The Emotional Impact of the COVID-19 Pandemic on Individuals with Progressive Multiple Sclerosis

Vote.gov

National MS Society's Ambassadors Ball

STUDY: Patient-Reported Financial Toxicity in Multiple Sclerosis: Predictors and Association with Care Non-Adherence

National MS Society Survey: The Economic Impact of MS

I'm a Veteran Who Gets My Medicines Through the Mail

STUDY: Greater Engagement with Health Information is Associated with Adoption and Maintenance of Healthy Lifestyle Behaviours in People with MS

National MS Society COVID-19 Response Fund

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Download the RealTalk MS App for Android

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

RealTalk MS Episode 160 Guests: Dr. Anthony Feinstein

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, AmbassadorsBall, Vote, RealTalkMS

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