RealTalk MS

• Episode 409: From the International Progressive MS Alliance Digital Tools Workshop

  Last week, I was in Philadelphia, attending the Digital Tools Workshop hosted by the International Progressive MS Alliance. Welcome to Part One of our coverage!   As we look around us, it's hard to imagine a single aspect of our lives that hasn't been impacted by the constant and rapid evolution of technology. Just consider the capabilities of the device you're using to listen to this podcast. This workshop highlighted the ways that emerging digital tools will accelerate MS clinical trials and enhance personalized MS care. In this week's episode, you'll hear Dr. Robert Fox, the Chair of the International Progressive MS Alliance Scientific Steering Committee, and Dr. Tim Coetzee, President and CEO of the National MS Society, discuss some of the ways digital tools can impact MS research and care, as well as some of the issues that need to be addressed to ensure that everyone living with MS can benefit from these tools. Then, you'll hear the workshop co-chair, Dr. Jennifer Graves, discuss her team's work in developing a digital tool that can accurately determine whether an individual has relapsing-remitting MS or progressive MS -- after a 5-minute test that consists of tapping their fingers and feet! You'll hear Dr. Anne Helme, the Head of Research and Access at the MS International Federation, explain how digital tools can boost patient-reported outcomes in MS research. And you'll hear Dr. Stefan Gold share the positive results of his study involving an at-home digital intervention designed to treat depression among people with MS.  We have a lot to talk about! Are you ready for RealTalk MS??! This Week: From the International Progressive MS Alliance Digital Tools Workshop  :22 Dr. Tim Coetzee and Dr. Robert Fox discuss how digital tools will impact MS research and care  :54 Dr. Jennifer Graves talks about her team's work in developing a digital tool, and how MS research is being threatened by drastic cuts in federal research funding   9:56 Dr. Anne Helme discusses how digital tools will boost patient-reported outcomes in MS research  16:26 Dr. Stefan Gold shares the positive results of his study involving an at-home digital intervention designed to treat depression among people with MS.   24:06 Share this episode  37:38 Have you downloaded the free RealTalk MS app?  37:58 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/409 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 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://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 409 Guests: Dr. Tim Coetzee, Dr. Robert Fox, Dr. Jennifer Graves, Dr. Anne Helme, Dr. Stefan Gold Privacy Policy

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• Episode 408: Explaining Your MS to All Those Well-Meaning Family Members and Friends Who Get It Wrong with Kris Inman

  Have you experienced those familiar feelings of frustration when the people closest to you don't seem to get your MS? Do you find yourself explaining and re-explaining things to well-meaning friends, co-workers, and even family members?   Kris Inman's wife, Mariah, was diagnosed with MS in 2020, and, since then, Kris has been Mariah's care partner and an active member of the MS community. This week, Kris joins me to talk about overcoming the challenge of helping your friends and family understand what an MS diagnosis means and what living with MS is really like.  We're also sharing research results that show that someone's age at the time they experience the first symptoms of MS can determine whether they experience a better physical or mental health-related quality of life. We'll tell you about a report issued jointly by the MS Society in the UK and the Work Foundation at Lancaster University that details specific challenges people with MS face in the workplace. We'll give you the details about the National MS Society's Fast Forward investment in Neurogenesis, a biotech company developing a proprietary stem cell therapy designed to treat progressive MS. And we'll share news about the Portable Neuromodulation Stimulator (PoNS), a device that's used in combination with physical therapy to reduce walking problems for people with MS.  We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The frustration you might feel when some of the people closest to you don't really seem to get your MS.  :22 Study results show that the age of MS onset can be predictive of physical and mental health-related quality of life  1:27 A report details challenges faced in the workplace by people living with MS in the UK  4:28 The MS Society's Fast Forward program has made an investment in Neurogenesis, a biotech company developing a proprietary cell therapy designed to treat progressive MS  8:00 Aetna Healthcare has become the third major private insurer to offer reimbursement for the PoNS device  11:00 Kris Inman discusses the finer points of being an MS care partner  14:17 Share this episode  29:13 Have you downloaded the free RealTalk MS app?  29:32 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/408 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 Become an MS Activist https://nationalmssociety.org/advocacy Act Now! Contact Your Senators About Medicaid and Health Coverage https://nmss.quorum.us/campaign/127768 STUDY: Age of Multiple Sclerosis Symptom Onset Affects Mental and Physical Health-Related Quality of Life in Opposite Directions https://sciencedirect.com/science/article/abs/pii/S2211034825003037 REPORT: No Compromises: Supporting People with MS to Thrive In and Out of Work https://www.lancaster.ac.uk/media/lancaster-university/content-assets/documents/lums/work-foundation/reports/WF_MSSNoCompromises-SupportingpeoplewithMStothriveinandoutofwork.pdf Neurogenesis https://neurogenesis-cell.com The Portable Neuromodulation Stimulator (PoNS) https://ponstherapy.com Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://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 408 Guest: Kris Inman Privacy Policy

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• Episode 407: Overcoming Sleep Issues When You're Living with MS with Dr. Katie Siengsukon

  Getting a good night's sleep is something that benefits everyone. And if you're someone who's living with MS, it's perhaps even more important. But research suggests that more than half the people living with MS experience poor sleep.    Dr. Katie Siengsukon, the Director of the Sleep, Health, and Wellness Lab at the University of Kansas Medical Center Department of Physical Therapy and Rehabilitation Science, returns to the podcast to discuss the importance of good sleep hygiene, along with steps you can take to improve the quality of your sleep. We're also explaining how changes in U.S. public policy will impact people with MS. We'll tell you about an algorithm developed at Duke University that can predict (with 80-90% accuracy!) whether someone's MS symptoms will worsen in the weeks ahead. We'll share study results that show MS accelerates biological aging among children and teens with MS. We'll explain why this finding can also be applied to adults with MS, and what it means. And we'll tell you about the biotech start-up that has succeeded at bringing the brains of people who have passed away back to life, and we'll explain why that can have a major impact on CNS disease research. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Sleep Hygiene and MS  :22 How public policy changes in the U.S. will impact people with MS  1:18 What if you knew when an MS symptom was going to worsen?  6:18 Study results show MS accelerates biological aging in children  9:04 How re-animated human brains could accelerate CNS research (And which company is doing it!)  12:00 Dr. Katie Siengsukon discusses the importance of good sleep hygiene for people living with MS  15:37 Share this episode  33:32 Have you downloaded the free RealTalk MS app?  33:52 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/407 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 Become an MS Activist https://nationalmssociety.org/advocacy Act Now! Contact Your Senators About Medicaid and Health Coverage https://nmss.quorum.us/campaign/127768 STUDY: Performance of Machine Learning Models for Predicting High-Severity Symptoms in Multiple Sclerosis https://nature.com/articles/s41598-024-63888-x STUDY: Epigenetic Aging in Pediatric-Onset Multiple Sclerosis https://neurology.org/doi/10.1212/WNL.0000000000213673 Bexorg https://bexorg.com Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://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 407 Guest: Dr. Katie Siengsukon Privacy Policy

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• Episode 406: From the 2025 Consortium of MS Centers Annual Meeting: Part Two with Dr. John DeLuca, Dr. Brian Sandroff, and Kristine Werner Ozug

  Welcome to Part Two of our coverage of the Consortium of Multiple Sclerosis Centers annual meeting!   In this week's episode, Dr. John DeLuca shares research that has identified an effective behavioral treatment for MS-related fatigue.   Dr. Brian Sandroff discusses how MS rehabilitation has evolved and then answers some of your questions about exercise and MS.   And Kristine Werner Ozug, a member of the RealTalk MS team and someone who lives with MS, shares her perspective on the sessions and presentations she attended at CMSC. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Part 2 of our coverage from the 2025 Consortium of MS Centers Annual Meeting  :22 Dr. John DeLuca shares his research, which has identified an effective behavioral treatment for MS-related fatigue  1:15 Dr. Brian Sandroff discusses how MS rehabilitation has evolved and answers some of your questions  8:34 Kristine Werner Ozug shares her perspective on the sessions and presentations she attended at CMSC  19:34 Share this episode  31:13 Have you downloaded the free RealTalk MS app?  31:34 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/406 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 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://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 406 Guests: Dr. John DeLuca, Dr. Brian Sandroff, and Kristine Werner Ozug Privacy Policy

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• Episode 405: From the 2025 Consortium of MS Centers Annual Meeting -- Part One with Dr. Kathy Zackowski and Dr. Stephen Krieger

  Last week in Phoenix, Arizona, the Consortium of Multiple Sclerosis Centers (CMSC) held its annual meeting, and we had a chance to talk with some of the top MS experts in the world. Welcome to Part One of our coverage!   First, you'll hear Dr. Kathy Zackowski, the National MS Society's Associate Vice-President of Research, share her overview of the sessions and presentations that especially stood out to her.   Then, you'll hear Dr. Stephen Krieger as he expands on one of the most interesting and provocative presentations at the conference. Dr. Krieger headed up a panel of experts that explained how the terms used to describe MS today (relapsing-remitting, secondary progressive, and primary progressive) are no longer adequate and then offered answers to the question, "If MS is one disease, what does that mean for clinical conversations?".  We have a lot to talk about! Are you ready for RealTalk MS??! This Week: From the 2025 Consortium of MS Centers Annual Meeting  :22 Dr. Kathy Zackowski shares an overview of the sessions and presentations that caught her eye  1:08 Dr. Stephen Krieger discusses seeing MS as one disease  17:11 Share this episode  31:58 Have you downloaded the free RealTalk MS app?  32:18 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/405 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 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://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 405 Guests: Dr. Kathy Zackowski and Dr. Stephen Krieger Privacy Policy

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