RealTalk MS

Imagine being able to see improvement in cognition, motor function, and self-esteem, while enhancing neurological functions like walking and speech without taking another pill or even breaking a sweat.

Joining me to talk about the evidence-based benefits that people living with MS can gain through music and art therapy are Dr. Meera Rastogi, Veronica DeNoma, and Betsy Hartman.

We're also talking about the shocking and deeply concerning outcome of a study used to validate the reliability of a new tool to measure MS caregiver abuse.

We'll tell you how Zoom is working to make telehealth appointments better for everyone.

We're sharing the results of a study that measured the efficacy of a phone-based app to manage anxiety among young people diagnosed with pediatric MS.

Think you might like rock-climbing in the Rockies or whitewater kayaking on the Rogue River in Oregon? We'll give you the details of First Descents' 2022 outdoor adventures that are available at no cost to young adults living with MS.

And we'll remind you that Burgers to Beat MS is happening in Canada this Thursday. Find out how you can be a part of it no matter where you live!

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

Burgers to Beat MS happens this Thursday! :22

STRESS-MS measures MS caregiver abuse 2:46

Zoom is making improvements to telehealth 7:02

An app to reduce anxiety among young people diagnosed with pediatric MS 9:33

Free rock-climbing and whitewater kayaking adventures for young adults living with MS 13:17

Dr. Meera Rastogi, Veronica DeNoma, and Betsy Hartman discuss how art and music therapy can deliver real benefits to people living with MS 16:58

Share this episode 33:45

Download the free RealTalk MS app for your iOS or Android device 34:05

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/207

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance

Burgers to Beat MS https://BurgersToBeatMS.ca

STUDY: Validity and Reliability of the Scale to Report Emotional Stress Signs -- Multiple Sclerosis (STRESS-MS) https://meridian.allenpress.com/ijmsc/article/doi/10.7224/1537-2073.2020-016/467361/Validity-and-Reliability-of-the-Scale-to-Report

STUDY: Mobile Attention Bias Modification Training Is a Digital Health Solution for Managing Distress in Multiple Sclerosis: A Pilot Study in Pediatric Onset https://www.frontiersin.org/articles/10.3389/fneur.2021.719090/full

First Descents Outdoor Adventure Program Application https://firstdescents.org/programs/programs-application/

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

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

RealTalk MS Episode 207 Guest: Dr. Meera Rastogi, Veronica DeNoma, and Betsy Hartman

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS

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If you've ever wondered about whether MS advocacy makes a real difference, please consider that last year alone, MS Activists helped to bring about these changes:

• $10 Million increase in funding for the Congressionally-Directed MS Research Program
• $3 Billion increase in funding for the National Institutes of Health
• Sustained funding for the CDC's National Neurological Conditions Surveillance System (studying MS is one of the first 2 pilot projects for this new program)
• Passage of the CREATES Act (designed to lower prices and increase competitiveness in generic drug development)

Beyond these milestone achievements, advocating on behalf of your own interests is a personally empowering experience. Joining me to talk about what advocacy is all about is MS Activist Jenna Green.

We're also sharing the details of a clinical trial that measured the effects of the Wahls Diet and the Swank Diet on MS-related fatigue and quality of life.

We'll tell you about a study that identified a potential biomarker for MS-related cognitive decline.

We're talking about the FDA approval of Botox as a treatment for upper-limb spasticity.

And we'll let you know how you can support the MS Society of Canada by buying a burger.

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

This part is all about you :22

Study measures the effects of Wahls Diet and Swank Diet on MS-related fatigue and quality of life 4:03

Study identifies potential biomarker for MS-related cognitive decline 6:58

FDA approves Botox for managing upper-limb spasticity 10:35

A&W's Burgers to Beat MS benefits MS Society of Canada 11:34

MS Activist Jenna Green talks about what advocacy means and why it matters 14:05

Share this episode 31:46

Download the free RealTalk MS app for your iOS or Android device 32:06

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/206

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance

Advocate for Change -- Be an MS Activist https://nationalmssociety.org/advocacy

STUDY: Impact of the Swank and Wahls Elimination Dietary Interventions on Fatigue and Quality of Life in Relapsing-Remitting Multiple Sclerosis: The WAVES Randomized Parallel-Arm Clinical Trialhttps://journals.sagepub.com/doi/10.1177/20552173211035399

STUDY: Cognitive Decline in Multiple Sclerosis is Related to the Progression of Retinal Atrophy and Presence of Oligoclonal Bands: A 5-Year Follow-Up Studyhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC8315759/

Updated Botox label information https://media.allergan.com/actavis/actavis/media/allergan-pdf-documents/product-prescribing/20190620-BOTOX-100-and-200-Units-v3-0USPI1145-v2-0MG1145.pdf

Burgers to Beat MS https://BurgerstoBeatMS.ca

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

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

RealTalk MS Episode 206 Guest: Jenna Green

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

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Just a few weeks ago, life sciences company Abata Therapeutics came out of stealth mode, unveiling a $95 million dollar investment in a novel cell therapy to treat progressive MS.

Joining me to talk about this potentially transformational treatment for progressive MS are the President and CEO of Abata Therapeutics, Samantha Singer, and Dr. Richard Ransohoff, one of the company's co-founders as well as its Chief Medical Officer.

We'll also give you a sneak peek at a study that measured the impact of COVID-19 on people with MS in New York City.

We'll tell you about a study that examined the viability of at-home Tysabri infusions.

We'll share the details of the Can Do MS virtual programs that are happening all month long.

And we'll let you know how you can attend Dawnia Baynes's celebration for the entire MS community (did we mention that it's taking place in a very cool virtual world?!!!).

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

Abata Therapeutics unveils potentially transformational cell therapy for progressive MS :22

Study measures effects of COVID-19 on people with MS in New York City 11:18

Study examines the viability of at-home Tysabri infusions 14:26

Can Do MS virtual programs for August 16:04

Award-winning MS activist and support group leader Dawnia Baynes is throwing a party -- and you're invited 17:51

Share this episode 30:44

Download the free RealTalk MS app for your iOS or Android device 31:12

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/205

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance

Abata Therapeuticshttps://abatatx.com/

STUDY: Home Infusions of Natalizumab for People with Multiple Sclerosis: A Pilot Randomised Crossover Trialhttps://onlinelibrary.wiley.com/doi/10.1002/acn3.51410

Can Do MS August Program Info and Registration https://cando-ms.org/programs

Dawnia's "15" Celebrationhttps://15presentedbybrightside365.eventbrite.com

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

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

RealTalk MS Episode 205 Guest: Samantha Singer, Dr. Richard Ransohoff, Dawnia Baynes

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

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Research shows that members of minority communities often experience MS differently. And by differently, we mean worse. -- more severe symptoms, shorter time to disability, and greater levels of disability. That's why ensuring greater diversity in clinical research is of urgent importance.

At the same time, the conversation about putting the patient at the center of MS research has grown louder and more pronounced.

Major pharmaceutical companies have gotten both of these messages and joining me to talk about increasing diversity and ensuring patient-centricity in MS clinical research is Tanja Keiper, Director in the Clinical Delivery Unit of EMD Serono.

We'll also update you on the progress that MS activists are making as our key legislative issues work their way through Congress.

We'll tell you about an interesting study about stress triggers and the stress coping mechanisms most often used by people living with MS.

We're talking about a smartphone app that, one day, might provide your neurologist with a digital biomarker of MS-related cognitive changes.

And we'll share the details of a powerful new supercomputer that's busy studying multiple sclerosis so that it can create brand new MS therapies.

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

MS advocacy update :22

Study looks at stress triggers and stress coping mechanisms among people living with MS 5:52

A smartphone app to measure MS-related cognitive changes 9:20

A powerful new supercomputer is trying to figure out MS 11:41

Tanja Keiper talks about how EMD Serono is working to increase diversity and ensure patient-centricity in MS clinical research 14:29

Share this episode 27:04

Download the free RealTalk MS app for your iOS or Android device 27:25

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/204

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance

STUDY: The Role of Stress Perception and Coping with Stress and the Quality of Life Among Multiple Sclerosis Patients https://www.dovepress.com/the-role-of-stress-perception-and-coping-with-stress-and-the-quality-o-peer-reviewed-fulltext-article-PRBM p>STUDY: Reliability, Construct, and Concurrent Validity of a Smartphone-Based Cognition Test in Multiple Sclerosishttps://journals.sagepub.com/doi/10.1177/13524585211018103

evolutionRMS Studieshttps://www.evolutionstudies.com

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

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

RealTalk MS Episode 204 Guest: Tanja Keiper

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

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Summertime traditionally means getting out of the house, enjoying outdoor activities, and being active. But if you're living with MS, outdoor activity and summertime temperatures can raise red flags when it comes to your day-to-day quality of life.

My guest is Dr. Colin Lenington, an Occupational Therapist and Clinical Specialist at the VA Long Beach Healthcare System and we're talking about getting outside, staying safe, and keeping cool while you enjoy your summer activities.

We're joining the World Federation of Neurology and the global MS community on July 22nd, to celebrate World Brain Day 2021. This year's theme is Stop Multiple Sclerosis and we'll tell you where and how to register for the upcoming World Brain Day webinar.

We're also talking about study results that show the impact of delaying an Ocrevus infusion in order to enhance the effect of a COVID-19 vaccination.

We'll tell you about a study in the U.K. that followed 120 people with MS who received autologous hematopoietic stem cell transplantation (aHSCT).

We'll share news about a new way to successfully cross the blood-brain barrier and deliver medicines to the central nervous system. (And we'll explain why that matters when it comes to treating MS)

And we'll tell you about a study of veterans with MS that should convince anyone to adhere to their DMT treatment plan.

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

July 22nd is World Brain Day! :22

My live conversation with Dr. Victoria Leavitt takes place this Wednesday, on the eSupport Health Wednesday Workshop :55

Study shows the effect of extended interval dosing of Ocrevus 2:46

Study shows real-world outcomes for 120 people with MS who received aHSCT 5:49

Biopharmaceutical company successfully delivers an anti-inflammatory molecule across the blood-brain barrier 7:43

Study shows the benefits of adhering to DMTs 9:03

Dr. Colin Lenington talks about how to enjoy summertime activities while staying safe and staying cool 11:24

Share this episode 24:25

Catch my live conversation with Dr. Victoria Leavitt on Wednesday 24:48

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/203

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance

World Brain Day 2021 https://wfneurology.org/world-brain-day-2021

Register for the eSupport Health Wednesday Workshop: A Conversation with Jon Strum https://esupporthealth.zoom.us/meeting/register/tJEpc--rqT0vHdJ6FbPDH7S1enOrLYAIQG-K

STUDY: Ocrelizumab Extended Interval Dosing in Multiple Sclerosis in Times of COVID-19https://nn.neurology.org/content/8/5/e1035

STUDY: Autologous Haematopoietic Stem Cell Transplantation in Active Multiple Sclerosis: A Real-World Case Serieshttps://n.neurology.org/content/early/2021/07/12/WNL.0000000000012449

Bioasis Announces Positive Results from Efficacy Study of xB3TM -1L-1RA in a Model of Multiple Sclerosis https://www.globenewswire.com/news-release/2021/07/07/2259430/0/en/Bioasis-Announces-Positive-Results-From-an-Efficacy-Study-of-xB3-IL-1RA-in-a-Model-of-Multiple-Sclerosis.html

STUDY: The Impact of Adherence to Disease-Modifying Therapies on Functional Outcomes in Veterans with Multiple Sclerosis https://journals.sagepub.com/doi/pdf/10.1177/11795735211028769

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

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

RealTalk MS Episode 203 Guest: Dr. Colin Lenington

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS

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In medicine, a prodrome is a set of signs or symptoms that can appear years before the major symptoms of an illness develop. Recognizing the prodromal phase of MS could mean that, one day, someone who is highly likely to be diagnosed with multiple sclerosis could receive proactive treatment years in advance and, perhaps, never develop any MS symptoms.

Dr. Helen Tremlett, a professor, and the Canada Research Chair in Neuroepidemiology and Multiple Sclerosis at the University of British Columbia, is joining me this week to discuss how understanding the MS prodrome can fundamentally change the way that MS is diagnosed and treated.

We'll also tell you about a study that shows early treatment with high-efficacy disease-modifying therapies can significantly reduce relapse rates for people living with active secondary progressive MS.

We'll share results from a study that shows, on their first visit to a neurologist, Black people have more severe MS than White people.

We'll tell you about two Phase 3 clinical trials that have just received approval from the U.S. Food & Drug Administration.

We'll share the results of a Belgian study that analyzed the efficacy of a cannabis spray in treating MS spasticity and improving quality of life.

And we'll give you a heads-up about a new web series that features raw, unfiltered conversations about the good, bad, and messy parts of living with MS.

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

What is the MS prodrome? :22

Does early treatment with high-efficacy DMTs reduce relapse rates in people with secondary progressive MS? 2:32

Study shows Blacks with MS present with more severe disease and greater disability than Whites 5:54

FDA approves 2 Phase 3 clinical trials for a potential disease-modifying therapy 8:18

Study shows cannabis spray improves spasticity and quality of life for people living with MS 10:15

MS Confidential is the web series you don't want to miss 11:47

Dr. Helen Tremlett explains what the MS prodrome is and why it's important 14:40

Share this episode 28:20

Download the free RealTalk MS app 28:48

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/202

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance

STUDY: Effects of High and Low Efficacy Therapy in Secondary Progressive Multiple Sclerosis https://n.neurology.org/content/early/2021/06/30/WNL.0000000000012354

STUDY: Association of Disease Severity and Socioeconomic Status in Black and White Americans with Multiple Sclerosishttps://n.neurology.org/content/early/2021/06/30/WNL.0000000000012362

STUDY: Sativex Cannabinoid Oromucosal Spray in Patients with Resistant Multiple Sclerosis Spasticity: The Belgian Experiencehttps://pubmed.ncbi.nlm.nih.gov/34157999/

Episode 1 of MS Confidential: Vanityhttps://www.youtube.com/watch?v=thtC81q7LVA

Where to find future episodes of MS Confidentialhttps://unfixedmedia.com/ms-confidential

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

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

RealTalk MS Episode 202 Guest: Dr. Helen Tremlett

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS

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Every two years, the MS International Federation awards the Charcot Award, recognizing lifetime achievement in outstanding research into the understanding and treatment of MS. My special guest is this year's recipient of the Charcot Award, Professor Alan Thompson, who is being honored for what is truly a remarkable body of work.

We'll also share some encouraging news from the FDA about a biomarker for progressive MS clinical trials.

We'll tell you about the outcome of a study that shows high-efficacy disease-modifying therapies lead to less disability over time for people with relapsing-remitting MS.

And we'll give you the details about how you can participate in a clinical trial that's comparing the safety, efficacy, and cost-effectiveness of autologous hematopoietic stem cell therapy (aHSCT) with high-efficacy disease-modifying therapies.

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

What the Charcot Award is all about :22

FDA supports further development of a biomarker for progressive MS clinical trials 2:10

Study shows high-efficacy DMTs lead to less disability over time 5:58

Recruitment underway for clinical trial comparing stem cell therapy to high-efficacy disease-modifying therapies 9:13

This month's Can-Do MS programs help battle fatigue 12:12

My conversation with Professor Alan Thompson 14:39

Share this episode 31:33

Download the free RealTalk MS app 31:53

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/201

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance

FDA Letter of Support to encourage the further use and study of neurofilament light chain as a biomarker for early clinical trials in progressive MS https://www.fda.gov/media/149608/download

STUDY: Long-Term Disability Trajectories in Relapsing Multiple Sclerosis Patients Treated with Early Intensive or Escalation Treatment Strategies https://journals.sagepub.com/doi/full/10.1177/17562864211019574

Beat-MS Studyhttps://www.beat-ms.org

CanDo MS Program Information and Registration https://cando-ms.org/programs

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

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

RealTalk MS Episode 201 Guest: Professor Alan Thompson

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS

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We're celebrating the 200th episode of RealTalk MS by sitting down with Cyndi Zagieboylo, the President and CEO of the National Multiple Sclerosis Society, and looking at some of the most vital initiatives ever undertaken by the National MS Society, including the launch of the International Progressive MS Alliance, the MS Society's efforts to support diversity, equity, and inclusion throughout the MS movement and in MS clinical research, and the groundbreaking Pathways to Cures blueprint.

Over the span of her 36-year career with the National MS Society, Cyndi had the opportunity to work with the Society's founder, Sylvia Lawry. During our conversation, we look back at the founding of the National MS Society in 1948, Ms. Lawry's founding of the MS International Federation in 1967, and Cyndi shares her insights into what might have been on Ms. Lawry's mind if she were with us today.

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

Welcome to Episode #200! :18

A toast to each of you who have made this possible :58

My conversation with Cyndi Zagieboylo 2:57

Share this episode 31:42

Thanks again! 32:02

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/200

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

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

RealTalk MS Episode 200 Guests: Cyndi Zagieboylo

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS

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Receiving an MS diagnosis can be frightening. And receiving that diagnosis as a young adult can feel like your whole world just got flipped upside down. When Matoaka Kipp (she/her/hers) received her MS diagnosis at the age of 21, she not only had to come to terms with how that diagnosis would change her life but as a member of the LGBTQ+ community, Matoaka also had to confront some of the systemic inequities of our healthcare system.

Matoaka joins me this week to share her MS journey.

We're also talking about why the U.S. Supreme Court tossed out a lawsuit that threatened access to healthcare for every person living with MS in the United States.

We'll tell you who was just named this year's recipient of the prestigious Charcot Award and you'll learn how this person's work has directly affected your MS diagnosis.

We're sharing the surprising results of a study of cannabis use and cognition among people with MS.

And we'll tell you about a $1 million dollar award that will fund no-cost outdoor adventures (think adaptive skiing, kayaking, etc!) for young adults who are living with MS.

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

National MS Society's statement in support of the LGBTQ+ community :22

U.S. Supreme Court Tosses Out ACA Lawsuit (and why that matters to everyone living with MS) 3:26

Winner of the Charcot Award is announced 7:14

Surprising results from a study on cannabis and cognition among people with MS 10:07

If you're living in the U.K. and you use a wheelchair for mobility, here's your chance to be a part of MS research 14:07

First Descents receives $1 million dollars to support no-cost outdoor adventures for young adults living with MS 15:04

Matoaka Kipp shares her MS journey 17:30

Share this episode 40:41

Please join me next week for our 200th episode! 41:03

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/199

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance

National MS Society LGBTQ+ Needs Survey https://ntlms.org/LGBTQSurvey

Matoaka's Greeting Cards https://www.instagram.com/habibimail

STUDY: Impaired Awareness: Why People with Multiple Sclerosis Continue Using Cannabis Despite Evidence to the Contrary https://onlinelibrary.wiley.com/doi/10.1002/brb3.2220

University of Birmingham Study Participant Information https://drive.google.com/file/d/10CW_slePiO4n7HjVeimSuCGgfdEX1y-m/view

First Descents Outdoor Adventures for Young Adults Impacted by MS https://firstdescents.org/programs/ms-programs/

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

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

RealTalk MS Episode 199 Guests: Matoaka Kipp

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS

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At some point, about 50% of the people living with MS will experience clinical depression. This goes beyond simply feeling sad. Left unchecked, MS-related depression can sometimes lead to tragic consequences.

As it relates to multiple sclerosis, mental health must be de-stigmatized, studied more rigorously, and discussed more often.

Returning to the podcast to talk about managing the mood-related symptoms of MS is Dr. Anthony Feinstein, a Professor of Psychiatry at the University of Toronto and an expert in the neuropsychiatry of multiple sclerosis.

We're also talking about study results that show how your beliefs about your disease-modifying therapy can determine whether you stay on it.

Dr. Brian Sandroff joins me to share the outcome of a Kessler Foundation study that may lead to a whole new way for people living with MS who are experiencing substantial disability to improve cognition and mobility impairment through rehabilitation exercise.

You'll hear about a research team that may have identified a biomarker for MS progression. And we'll tell you why that can have a huge impact on treating progressive MS.

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

Perceptions of DMTs can predict MS treatment adherence 2:03

Dr. Brian Sandroff shares the results of Kessler Foundation's robotic exoskeleton-assisted exercise pilot study 7:03

Researchers identify a simple amino sugar as a biomarker for MS progression 17:57

Dr. Anthony Feinstein discusses depression and anxiety in MS 22:30

Share this episode 39:44

Have a minute? Leave a rating & review for the podcast 40:04

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/198

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance

STUDY: Beliefs About Medication As Predictors of Medication Adherence In a Prospective Cohort Study Among Persons With Multiple Sclerosis https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-021-02149-0

STUDY: A Pilot Randomized Controlled Trial of Robotic Exoskeleton-Assisted Exercise Rehabilitation in Multiple Sclerosishttps://www.msard-journal.com/article/S22110348(21)00203-0/fulltext

STUDY: Association of a Marker of N-Acetylglucosamine with Progressive Multiple Sclerosis and Neurodegenerationhttps://jamanetwork.com/journals/jamaneurology/fullarticle/2779917

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

Download the RealTalk MS App for iOS https://itunes.apple.com/us/app/realtalk-ms/id1436917200

Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk

Give RealTalk MS a rating and review http://www.realtalkms.com/review

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

RealTalk MS Episode 198 Guests: Dr. Brian Sandroff, Dr. Anthony Feinstein

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS

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