Show cover of RealTalk MS

RealTalk MS

Jon Strum cuts through all the jargon and breaks down the latest multiple sclerosis news. You’ll meet the scientists who are creating tomorrow’s MS treatments today. You’ll hear from the experts discussing how the latest tweaks and changes to our healthcare laws will impact your MS treatment. And we’ll be talking to the courageous MS warriors who are out there advocating on behalf of the MS community every day, as well as the men and women who are committed to living their best lives with MS and living their best lives as MS caregivers. If you're dealing with multiple sclerosis in your life -- as a patient, caregiver, family member, or friend -- join us each week for RealTalk MS.

Tracks

Episode 266: Making Life with MS Easier with Dr. Kathy Zackowski
Living with MS can make everyday run-of-the-mill tasks like bathing, cooking, and driving more challenging than they have to be. The National MS Society's Associate Vice President of Research, Dr. Kathy Zackowski, joins me with a whole list of simple adjustments and easy modifications that you can make that will make the things you do every day easier. Get ready to take some notes! A lot of you have reached out to me, sharing your thoughts about Selma Blair competing on Dancing with the Stars. Collectively, your opinions illustrate the vast diversity of opinion regarding Selma's latest adventure. In this week's episode, I'm sharing some of my thoughts. I've always said that MS doesn't affect individuals -- it affects families. This week, we're talking about a study that focused on anxiety, depression, and stress communication between people living with MS and their partners.  We'll also tell you about a study that makes the case for using artificial intelligence to accurately predict EDSS scores for people living with MS. And we'll tell you about a drug that's been studied in clinical trials for cancer that may also show promise as a remyelination therapy. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Selma Blair on DWTS, I'm back from the 2022 Caregiving Research Conference, and simple adjustments & minor modifications that can make life with MS easier  :22 Researchers analyzed anxiety, depression, and stress communication in couples affected by MS  3:28 Can artificial intelligence predict an individual's EDSS score as accurately as their neurologist?   7:37 Repurposing a drug that's been studied in clinical trials for cancer may be a step forward in remyelination for people living with MS  12:27 Dr. Kathy Zackowski returns to the podcast with a boatload of simple adjustments and minor modifications that can make managing your everyday tasks a lot easier   15:38 Share this episode  36:55 Download the RealTalk MS app for your iOS or Android device   37:16 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/266 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: jon@realtalkms.com 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: Psychosocial Impact of Multiple Sclerosis on Couples: Relationship Between Anxiety, Depression, and Stress Communication of Both Partners https://journals.sagepub.com/doi/10.1177/21501319221119142 STUDY: Validation of a Machine-Learning Approach to Estimate Expanded Disability Status Scale Scores for Multiple Sclerosis  https://journals.sagepub.com/doi/10.1177/20552173221108635 STUDY: Inhibition of Chk2 Promotes Neuroprotection, Axon Regeneration, and Functional Recovery After CNS Injury https://science.org/doi/10.1126/sciadv.abq2611 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 266 Guest: Dr. Kathy Zackowski Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
38:29 10/03/2022
Episode 265: Making MS Research Accessible to People Affected by MS and Why That Matters with Sharon Roman
Living with MS comes with its own set of sometimes significant challenges.  But being in the dark, unaware of the noteworthy and remarkable advances being made in MS research is one challenge that we're learning to overcome.  Sharon Roman is a patient-partner and writer for the British Medical Journal Group. Sharon lives with MS and she also writes a blog called Tremlett's MS Research Explained. The blog features plain-English posts detailing the research being done by Professor Helen Tremlett and her team. Professor Tremlett is the Canada Research Chair in Neuroepidemiology and Multiple Sclerosis at the University of British Columbia. Sharon joins me to talk about Professor Tremlett's pioneering research on the prodromal phase of MS, and to discuss why it's important to make MS research accessible and understandable to everyone in the MS community. We're also sharing study results that show the key to reducing MS fatigue could be a trip to the gym. We'll tell you about a study that measured improvements in physical disability, fatigue, and health-related quality of life among people with MS after they received stem cell therapy. We'll tell you about the significant differences in the gut microbiome of people living with MS and what that might mean for potential new treatments. We'll tell you about a study that discovered an interesting difference in immune cells among people living with MS. And we'll explain the riddle this poses for scientists. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The importance of making MS research accessible to people affected by MS  :22 A study shows that high-intensity resistance training improves MS fatigue  2:44 A study measures the long-lasting benefits of aHSCT for people living with MS   6:31 A study identifies differences in specific bacteria levels in the gut microbiome of people living with MS  9:59 A study reveals differences in immune cells among people living with MS  13:22 Sharon Roman discusses the importance of making MS research accessible to people affected by MS  18:43 Share this episode  32:04 Download the RealTalk MS app for your iOS or Android device   32:24 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/265 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: jon@realtalkms.com 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 Tremlett's MS Research Explained https://tremlettsmsresearchexplained.wordpress.com STUDY: High-Intensity Resistance Training in People with Multiple Sclerosis Experiencing Fatigue: A Randomised Controlled Study https://msard-journal.com/article/S2211-0348(22)00613-7/fulltext STUDY: Impact of Autologous HSCT on the Quality of Life and Fatigue in Patients with Relapsing Multiple Sclerosis https://www.nature.com/articles/s41598-022-19748-7 National MS Society: aHSCT and MShttps://nationalmssociety.org/Treating-MS/aHSCT STUDY: Gut Microbiome of Multiple Sclerosis Patients and Paired Household Controls Reveal Associations with Disease Risk and Course https://cell.com/cell/fulltext/S0092-8674(22)01115-1 STUDY: Broader Epstein-Barr Virus-Specific T Cell Receptor Repertoire in Patients with Multiple Sclerosis https://rupress.org/jem/article/219/11/e20220650/231431/Broader-Epstein-Barr-virus-specific-T-cell 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 265 Guest: Sharon Roman Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
33:36 09/26/2022
Episode 264: It's Our 5-Year Anniversary with CNN's John King and a Dawnia Baynes Takeover
We're celebrating the 5th anniversary of RealTalk MS and we're kicking it off with my exclusive conversation with CNN national correspondent and anchor, John King. John was diagnosed with MS in 2008. However, John didn't disclose his diagnosis until 2021 -- in an unplanned moment on national television. John shares his MS journey from the day he was diagnosed through his unplanned disclosure. And he also shares a message for anyone who is newly diagnosed with MS. Then, we're doing something completely different! You won't want to miss the second half of this special 5th anniversary episode when listener Dawnia Baynes takes over RealTalk MS -- and interviews Jon! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We're celebrating our 5th anniversary!  :22 My exclusive conversation with CNN's John King  4:22 Welcome to the Dawnia Baynes Takeover!   23:10 Share this episode  38:08 Download the RealTalk MS app for your iOS or Android device   38:28 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/264 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: jon@realtalkms.com 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 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 264 Guests: John King and Dawnia Baynes Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
39:40 09/19/2022
Episode 263: Managing Your Mental Health When You're Living With MS with Dr. Dawn Ehde
In addition to its physical symptoms, MS can also affect your emotional well-being. Depression, persistent anxiety, and extreme irritability are common. And, just like the physical symptoms of MS, they require treatment. But people living with MS tend to focus on their physical health and, too often, end up neglecting their mental health. Dr. Dawn Ehde joins me to talk about maintaining and strengthening your emotional well-being when you're living with MS, and she'll introduce you to a new resource that you're going to want to know about. This Thursday, the National MS Society is hosting the virtual Hispanic/Latinx MS Experience Summit. The event is free and the sessions will be available in both English and Spanish. We're sharing the details and we'll tell you how and where to register. We'll tell you about a study that compared how low-efficacy and high-efficacy disease-modifying medications impacted brain atrophy and disease activity. We'll share study results that showed how choosing to be on disease-modifying medications affected mortality. And we'll tell you about a study that focused on how MS impacts your ability to show up at work. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Managing your mental health  :22 The Hispanic/Latinx MS Experience Summit takes place this Thursday, Sept 15. Here's how to register  2:20 A study compares low-efficacy and high-efficacy disease-modifying medications   3:40 A study assesses the association between being on a disease-modifying medication and surviving  7:39 A study shows that that people with MS miss work more than twice as much as healthy people  9:56 Dr. Dawn Ehde discusses how you can maintain and strengthen your emotional well-being and she introduces a new resource that you're going to want to know about  14:40 Share this episode  31:06 Download the RealTalk MS app for your iOS or Android device   31:27 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/263 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: jon@realtalkms.com 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 What to Expect from Mental Health Care: A Guide for People with MS https://www.nationalmssociety.org/getmedia/a4fa7de4-2196-4b6d-9dd5-e804ecfdb119/CD_pubs_mentalHealthGuidance_0422_FINAL.pdf National MS Society Hispanic/Latinx MS Experience Summit https://nmss.6connex.com/event/HispanicandLatinx/Login STUDY: High-Efficacy Therapy Reduces Subcortical Grey Matter in Japanese Patients with Relapsing-Onset Multiple Sclerosis: A 2-Year Cohort Study https://www.sciencedirect.com/science/article/abs/pii/S2211034822005855 STUDY: Disease-Modifying Drugs for Multiple Sclerosis and Association with Survival https://nn.neurology.org/content/9/5/e200005 RealTalk MS Episode 211: The Ins and Outs of Employment with MS with Dr. Phillip Rumrill https://realtalkms.com/211 STUDY: Work Productivity Loss Among Adults Aged 18-64 Years with Multiple Sclerosis in the United States: A Propensity Score Matched Study https://www.sciencedirect.com/science/article/abs/pii/S1551741122002091?via%3Dihub 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 263 Guest: Dr. Dawn Ehde Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy  
32:39 09/12/2022
Episode 262: Making Shared Decision-Making Work For You with Dr. Marijean Buhse
The conversation between a doctor and patient is evolving from a time when that conversation was often limited to the doctor prescribing a particular disease-modifying medication and the patient silently nodding their head in agreement to something much more closely resembling a real conversation. Shared decision-making offers the patient an opportunity to discuss their treatment goals, explain their risk tolerance, and talk about their comfort level with side effects.  But not every neurologist, nurse practitioner, or MS specialist has made the transition to shared decision-making. Some haven't even heard of it. And some patients worry that shared decision-making means they have more work to do in preparing for an appointment with their healthcare provider. Dr. Marijean Buhse joins me to walk us through how shared decision-making works for people living with MS -- and what to do if it isn't working for you. We'll also tell you where you can catch the video replay of an MS Society webcast that explains how and when the new drug pricing law will impact the cost of your MS medications if you're on Medicare. We'll share the registration details for next week's Hispanic/Latinx MS Experience Summit We'll tell you about a new research collaboration between iConquer MS, the National MS Society, and Quest Diagnostics We'll share study results that point to a novel pathway to myelin repair. We'll share study results that indicate the rate of MS in a country may have less to do with latitude and sun exposure and more to do with healthcare spending. And we're giving a shout-out to A&W Canada and the MS Society of Canada for raising $1.8 million during the Burgers to Beat MS event. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: How shared decision-making shapes your MS treatment plan  :22 You can catch the replay of the MS Society's webcast or read the one-page "explainer" about how and when the new drug pricing law will impact your MS medications if you're on Medicare  2:47 The Hispanic/Latinx MS Experience Summit takes place on Sept 15. Here's how to register  3:41 iConquer MS teams up with the National MS Society and Quest Diagnostics for a study that will track the long-term effects of COVID-19 vaccines on b-cells and T-cells among people on anti-cd20 medications   5:14 A research team at Oregon Science & Health University are exploring a unique pathway to remyelination, with promising early results  7:41 A study shows that the rate of MS in different countries may have less to do with latitude and more to do with healthcare spending  11:57 Burgers to Beat MS beats its goal and raises $1.8 million dollars  15:06 Dr. Marijean Buhse discusses how shared decision-making works and what to do if it isn't working for you  16:45 Share this episode  30:38 Download the RealTalk MS app for your iOS or Android device   30:59 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/262 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: jon@realtalkms.com 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 WEBCAST REPLAY: What Does the New Drug Pricing Law Mean for You? https://www.youtube.com/watch?v=xQ0HueOmo0U National MS Society Explainer: What Does the New Drug Pricing Legislation Mean for People with MS? https://www.nationalmssociety.org/getmedia/6fa7aae3-0543-4884-b783-359b0df683aa/IRA-Drug-Pricing-Timeline.pdf National MS Society Hispanic/Latinx MS Experience Summit https://nmss.6connex.com/event/HispanicandLatinx/Login STUDY: A Modified Flavonoid Accelerates Oligodendrocyte Maturation and Functional Remyelinationhttps://onlinelibrary.wiley.com/doi/10.1002/glia.23715 STUDY: Association of Multiple Sclerosis Prevalence With Sociodemographic, Health Systems, and Lifestyle Factors on a National and Regional Level https://n.neurology.org/content/early/2022/08/24/WNL.0000000000200962 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 262 Guest: Dr. Marijean Buhse Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy  
32:11 09/05/2022
Episode 261: Service Dogs for People Living With MS with Trevor Hardy
When you're living with MS, even the most mundane daily tasks can sometimes be challenging. There are days when opening a door, taking things out of a drawer or a cupboard, or picking something up from the floor can all seem out of reach. Those just happen to be some of the many tasks that a service dog can help you with. This week, attorney Trevor Hardy joins me to talk about the impact that his service dog, Tristan, has had on his life.  We're also reviewing what you need to know about monkeypox and MS. We'll share the results from a Phase 3 clinical trial for Ublituximab, an investigational anti-cd20 therapy for MS. We'll talk with Dr. Roberto-Alfonso Dunn about the results of a study that he recently headed up at Tisch Multiple Sclerosis Research Center. And we'll share results from a study that attempted to identify specific factors at the time of diagnosis that could be predictive of future physical and mental health-related quality of life. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Study results and service dogs  :23 Monkeypox and MS: What you need to know  1:13 Results from the Phase 3 clinical trial for Ublituximab  6:03 Study results offer potentially encouraging news for people with MS on b-cell depleting therapies  8:58 Clues at the time of diagnosis are shown to be predictive of future physical and mental health-related quality of life  17:20 Trevor Hardy discusses how his service dog, Tristan, has changed his life  24:33 Share this episode  36:22 Download the RealTalk MS app for your iOS or Android device   36:42 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/261 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: jon@realtalkms.com 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 Monkeypox and MS: What You Need to Know https://www.nationalmssociety.org/About-the-Society/News/Monkeypox CDC: Monkeypox Vaccines https://www.cdc.gov/poxvirus/monkeypox/vaccines.html STUDY: Ublituximab versus Teriflunomide in Relapsing Multiple Sclerosis https://www.nejm.org/doi/full/10.1056/NEJMoa22019094 STUDY: Physical and Mental Health-Related Quality of Life Trajectories Among People with Multiple Sclerosishttps://n.neurology.org/content/early/2022/08/10/WNL.000000000200931 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 261 Guest: Dr. Roberto-Alfonso Dunn and Trevor Hardy Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy  
37:54 08/29/2022
Episode 260: MS and Men with Dr. Robert Shin
Women are roughly 3 times more likely to develop MS compared to men. But when men develop MS, they're more likely to experience a more aggressive disease course. Men are more likely to experience motor problems, loss of coordination and balance, and cognitive difficulties. When they experience a relapse, men are more likely to see their exacerbated symptoms continue, even during times of remission. Given these evidence-based observations, it seems sadly ironic that, as they develop MS symptoms, men are less likely to seek medical care or even a diagnosis. Dr. Robert Shin returns to the podcast to demystify some of the riddles surrounding men and MS. Dr. Shin is a Professor in the Department of Neurology at MedStar Georgetown University Hospital, and the Director of the Georgetown Multiple Sclerosis and Neuroimmunology Center. We're also sharing the registration details for the National MS Society's webcast, What Does the New Drug Pricing Law Mean to You?. The webcast takes place this Thursday, and you won't want to miss it. We'll tell you about a study that may have identified an imaging biomarker that can predict future MS progression. (And we'll explain why that can make a huge difference in your MS treatment plan) We'll share some discouraging news about the availability of Evusheld in the U.K. We'll point you toward Elizabeth Jameson's Washington Post editorial that explains how learning to swear can be therapeutic for someone living with progressive MS. And we'll share results from a Cleveland Clinic study that shows how a man's own definition of masculinity can get in the way of his MS treatment. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: MS and Men  :22 Find out how and when the Inflation Reduction Act will impact the cost of your prescription drugs  1:41 Study demonstrates that thinning of retinal layers predicts future MS disability  2:35 U.K. opts not to buy Evusheld  5:17 Elizabeth Jameson learns the value of a well-intentioned F-bomb  6:35 Study shows how masculine ideals drive healthcare decisions for men with MS  8:39 Dr. Robert Shin discusses the specifics associated with Men and MS  12:52 Share this episode  30:56 Download the RealTalk MS app for your iOS or Android device   31:16 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/260 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: jon@realtalkms.com 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 Registration for National MS Society Webcast: What Does the New Drug Pricing Law Mean to You? https://nmss.zoom.us/webinar/register/WN_auRCXBi2TGCgzHeV1CWMkw STUDY: Retinal Thinning After Optic Neuritis is Associated with Future Relapse Remission in Relapsing Multiple Sclerosis https://neurology.org/content/early/2022/08/01/WNL.0000000000200970 Elizabeth Jameson in the Washington Post: How I Learned that Swearing Can Be Good for the Soul https://wapo.st/3vpRJeo STUDY: Effects of Conformity to Masculine Norms and Coping on Health Behaviors in Men with Multiple Sclerosishttps://doi.org/10.7224/1537-2073.2020-116 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 260 Guest: Dr. Robert Shin Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy  
32:28 08/22/2022
Episode 259: How Lack of Sleep Affects MS (and What You Can Do About it!) with Dr. Katie Siengsukon
More than half of the people living with MS report significant disruptions in their sleep and difficulty maintaining a consistent sleep schedule. Sleep-related problems can lead to additional health issues, not to mention an overall decline in quality of life and well-being. The Director of the Sleep, Health, and Wellness Lab at the University of Kansas Medical Center Department of Physical Therapy and Rehabilitation Science, Dr. Katie Siengsukon, returns to the podcast to talk about how sleep affects MS and what you can do about it. We're also sharing all the ways the Inflation Reduction Act will benefit people living with MS. And we're celebrating the MS Activists who helped push this legislation through Congress! We have some good news to share about Mark Cuban's CostPlus Drug Company. We'll give you a quick review of where to find the show notes for each episode of RealTalk MS (and why you might want to do that!) We're sharing results from a study that demonstrated an important benefit for people with primary progressive MS who were treated with diseaes-modifying therapies. We'll tell you about two scientists who identified a combination of genes that increase a woman's risk of developing MS by 20 times. And we'll remind you that Burgers to Beat MS is happening this Thursday! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: How Sleep impacts MS  :22 All the ways the Inflation Reduction Act will benefit people living with MS  1:18 Mark Cuban's CostPlus Drug Company now carries the generic for Tecfidera  5:02 Where to find the show notes for every episode of RealTalk MS  9:53 Study results show that DMT use reduces the risk of wheelchair dependence for people with primary progressive MS  12:23 Researchers identify genetic mutations that increase the risk of a woman developing MS by 20 times  14:02 Burgers to Beat MS is happening Thursday!  17:48 Dr. Katie Siengsukon discusses how sleep impacts MS  19:42 Share this episode  35:48 Download the RealTalk MS app for your iOS or Android device   36:09 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/258 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: jon@realtalkms.com 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 Become an MS Activist https://nationalmssociety.org/advocacy Mark Cuban's CostPlus Drug Company https://costplusdrugs.com STUDY: Disease-Modifying Treatments and Time to Loss of Ambulatory Function in Patients with Primary Progressive Multiple Sclerosis https://jamanetwork.com/journals/jamaneurology/article-abstract/2794292 STUDY: X-Linked Genetic Risk Factors that Promote Autoimmunity and Dampen Remyelination are Associated with Multiple Sclerosis Susceptibility https://sciencedirect.com/science/article/pii/S2211034822005739 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 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 259 Guest: Dr. Katie Siengsukon Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy  
37:21 08/15/2022
Episode 258: Living with the Invisible Symptoms of MS with Kathy Costello
One of the realities of living with MS is that you're often dealing with invisible symptoms. And because symptoms like numbness and tingling, fatigue, depression, vision issues, and pain aren't apparent to others, it can be hard for people around you to understand what MS is all about and, specifically, what you might be struggling with. Kathy Costello returns to the podcast to discuss how to best manage the invisible symptoms of MS and how you can constructively shut down those conversations that begin with, "But you look so healthy!". We're also sharing the results of a study that focused on the results of 50 different studies about the effects of autologous hematopoietic stem cell therapy (aHSCT) on people with MS. We'll tell you about the National MS Society's $19 million dollar investment in 40 new MS research projects. It's August, so we have to talk about Burgers to Beat MS! And we'll give you the details about how you can participate in testing a new product that combines technology and music to improve gait problems for people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! Living with the invisible symptoms of MS   :22 A study of 50 studies about the effectiveness of aHSCT in treating MS  1:36 National MS Society invests $19 million in 40 new MS research projects  4:45 It's that time of year again...it's Burgers to Beat MS!  7:03 MedRhythms is asking for your help  8:15 Kathy Costello discusses the invisible symptoms of MS  9:57 Share this episode  32:04 Download the RealTalk MS app for your iOS or Android device   32:25 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/258 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: jon@realtalkms.com 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 Can Do MS https://cando-ms.org aHSCT in MS https://www.nationalmssociety.org/Treating-MS/aHSCT#section-0 Autologous Hematopoietic Stem Cell Transplantation in Multiple Sclerosis: A Systemic Review and Meta-Analysis https://link.springer.com/article/10.1007/s40120-022-00389-x National MS Society Invests $19 Million to Launch 40 New MS Research Projects to Drive Pathways to Cures https://nms2cdn.azureedge.net/cmssite/nationalmssociety/media/msnationalfiles/research/new-research-summer-2022.pdf Burgers to Beat MS https://BurgersToBeatMS.ca For More Information about MedRhythms Volunteer Testing Program Email: appliedresearch@medrhythms.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 258 Guest: Kathy Costello Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy  
33:36 08/08/2022
Episode 257: Dating With MS with Alaya McKinney and Akeem McMichael
Dating can be tricky for anyone. And it doesn't get any easier if you happen to be living with MS. In addition to all the typical dating considerations, you also have to think about things like if, how, and when to disclose your MS. You want to make sure your dating activities are physically doable. That might mean no long walks on the beach when the temperature is soaring. It might mean no hikes up steep mountain trails. And it might even mean having to postpone your date because your symptoms are acting up. But like so many other things in life, with a little planning and adaptation, a person living with MS can enjoy a fulfilling dating life. I'm devoting this entire episode of RealTalk MS to a conversation about dating with MS.  Alaya McKinney and Akeem McMichael, two millennials who are each out there in the dating world, join me to share their real-world experiences and strategies for dating while living with MS.  We have a lot to talk about! Are you ready for RealTalk MS??! Alaya McKinney and Akeem McMichael talk about dating with MS  :22 Share this episode  29:04 Download the RealTalk MS app for your iOS or Android device   29:25 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/257 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: jon@realtalkms.com 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 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 257 Guest: Alaya McKinney and Akeem McMichael Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy  
30:32 08/01/2022
Episode 256: How NeuraLight May Revolutionize Drug Development and MS Care with Co-Founder and CEO Micha Breakstone
Imagine that, using your smartphone, you log into a Zoom call from home. You connect with your MS specialist and, while you're chatting, an artificial intelligence-based system is analyzing biometric measurements that will enable your doctor to deliver or fine-tune an MS treatment plan that's been personalized to meet your exact needs. That's the vision driving NeuraLight, an early-stage company that's, first, aiming to re-write clinical trial design and accelerate new drug development. Joining me to give us an exclusive briefing on NeuraLight's game-changing mission is the co-founder and CEO of NeuraLight, Micha Breakstone.  We're also sharing the results of a pilot study that looked at the impact of intermittent fasting on people living with MS. We'll tell you about a study that explored how social support affected the quality of sleep among people living with MS during the COVID-19 pandemic. We've talked a lot about neurofilament light chain in past episodes of RealTalk MS. In this episode, we'll tell you about Labcorp's 2,000 patient service centers that now offer a blood test to measure neurofilament light chain levels. (And we'll tell you why that's a very good thing!) We'll also share the results of a study that shows how experts may be underestimating the economic burden of living with MS in Canada. And if you think you might be interested in participating in a study designed to measure the impact of different diets on MS, we'll give you the details about how you can get involved. We have a lot to talk about! Are you ready for RealTalk MS??! NeuraLight's vision of the future   :22 Intermittent fasting produces immune and metabolic changes in people with MS  1:28 Study shows social support is a predictor of sleep quality in people with MS during the COVID-19 pandemic  4:30 Labcorp announces availability of neurofilament light chain blood test  6:39 CanProCo research shows the economic burden of living with MS in Canada may be underestimated  8:58 Dr. Terry Wahls is recruiting for a study of how 3 different diets impact MS  12:16 Micha Breakstone gives us an exclusive briefing about how NeuraLight may change everything (for the better!) when it comes to MS drug development and MS care  15:28 Share this episode  34:17 Download the RealTalk MS app for your iOS or Android device   34:38 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/256 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: jon@realtalkms.com 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 NeuraLight https://neuralight.ai STUDY: Intermittent Calorie Restriction Alters T-Cell Subsets and Metabolic Markers in People with Multiple Sclerosis https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(22)00305-X/fulltext STUDY: Social Support Predicts Sleep Quality in People with Multiple Sclerosis During the COVID-19 Pandemic https://www.msard-journal.com/article/S2211-0348(22)00481-3/fulltext#%20 STUDY: Productivity Loss Among People with Early Multiple Sclerosis: A Canadian Study https://journals.sagepub.com/doi/10.1177/1352458521069070 Screening Survey for Efficacy of Diet on Quality of Life in Multiple Sclerosis Study https://recap.icts.uiowa.edu/surveys/?s=JX73EYRJNPF9MHRR 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 256 Guest: Micha Breakstone Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy  
35:49 07/25/2022
Episode 255: Aging With MS with Dr. John Corboy
In last week's episode, we looked at talking with kids about MS. This week, we'll visit the opposite end of the spectrum as Dr. John Corboy discusses some of the things you'll want to think about as you age with MS.  Dr. Corboy is a professor of neurology at the University of Colorado School of Medicine, and the Director of the Rocky Mountain Multiple Sclerosis Center at the University of Colorado. Dr. Corboy is also the Principal Investigator in a recently completed clinical trial that focused on the effects of stopping MS disease-modifying medications in older people living with MS.  We're also sharing the details of a new legislative proposal designed to help manage the skyrocketing cost of prescription drugs. We'll invite you to be among the first people to review a just-published paper that focuses on how identifying the prodromal phase of MS may lead to disease prevention. We'll share the evidence from a study that shows how lifestyle choices like choosing not to smoke, engaging in physical activity, and eating a healthy diet can actually impact MS disease progression. And we'll share some shocking news about how much MS disease-modifying medication is wasted. We have a lot to talk about! Are you ready for RealTalk MS??! Aging and MS   :22 Revised legislative proposals to better manage the high cost of MS prescription medications  1:28 An important paper focused on how identifying the prodromal phase of MS can lead to disease progression 3:54 Lifestyle factors in MS disability progression  5:53 The shocking reality of DMT waste  9:09 Dr. John Corboy discusses aging and MS and the impact of stopping MS disease-modifying medications in older adults living with MS  13:33 Share this episode  33:17 Download the RealTalk MS app for your iOS or Android device   33:37 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  https://realtalkms.com/255 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: jon@realtalkms.com 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 RealTalk MS Episode 246: The High Cost of MS Medications with Steffany Stern https://realtalkms.com/246 National MS Society Applauds Revised Legislative Proposals to Lower the Cost of Prescription Drugs for People Affected by MS https://nationalmssociety.org/About-the-Society/News/The-National-Multiple-Sclerosis-Society-Applauds-R National MS Society Advocacy https://nationalmssociety.org/advocacy From the Prodromal Stage of Multiple Sclerosis to Disease Prevention https://www.nature.com/articles/s41582-022-00686-x STUDY: Lifestyle Factors in Multiple Sclerosis Disability Progression and Silent Brain Damage: A Cross-Sectional Study https://www.msard-journal.com/article/s2211-0348(22)00522-3/fulltext#%20 STUDY: Hiding in Plain Sight: The Magnitude of Unused Disease Modifying Therapies in Multiple Sclerosis and Strategies for Reducing the Economic Burden of Care https://pubmed.ncbi.nlm.nih.gov/35661567/ 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 255 Guest: Dr. John Corboy Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
34:51 07/18/2022
Episode 254: Talking to Kids About MS with Erin Martin
Whether we adults admit it or not, kids see everything. That includes seeing a parent or other family member who's living with MS. And because kids don't have an understanding of neurological conditions, they use their imaginations to fill in the blanks. That can very quickly take them down a rabbit-hole that's far scarier than the reality of living with MS. So, when do you talk to your kids about MS? And what do you say? Licensed social worker and behavioral specialist Erin Martin joins me to talk about talking to kids about your MS. If you're living with MS and you still smoke, we're sharing results of a study that you may want to carefully consider. We'll also share the results of two different studies that might help inform your COVID-19 strategy if you're on a b-cell depleting disease-modifying therapy. We'll let you know how you can catch the video replay of an excellent webinar presented by the International Progressive MS Alliance. We'll share the details about how a group of international experts discovered a method for measuring remyelinated MS lesions (And we'll tell you why that's become important right now) We'll also share some encouraging results of a study that looked at the impact of estriol and Copaxone on women living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! Talking to kids about MS   :22 Smoking is shown to affect MS progression  1:29 COVID-19 vaccines, breakthrough infections, and Evusheld  3:44 Catch the video replay of the International Progressive MS Alliance Webinar  8:31 A team of international experts discover a way to measure myelin repair  9:08 Combination of Estriol plus Copaxone is shown to reduce neurofilament light chain levels  11:57 Behavioral specialist Erin Martin discusses talking about MS with your kids  14:27 Share this episode  29:03 Download the RealTalk MS app for your iOS or Android device   29:24 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/254 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: jon@realtalkms.com 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 Effect of Smoking on Long-Term Grey Matter Atrophy and Clinical Disability in Patients with Relapsing-Remitting Multiple Sclerosis https://nn.neurology.org/content/9/5/e200008 STUDY: Tixagevimab and Cligavimab (Evusheld) Boost Antibody Levels to SARS-COV2 in Patients with Multiple Sclerosis on B-Cell Depleters https://sciencedirect.com/science/article/pii/S2211034822004163 VIDEO: Solving the Mystery of Progression: The Key to New Treatments for Progressive MS https://youtube.com/watch?v=U5sm54HSBpY STUDY: A New Advanced MRI Biomarker for Remyelinated Lesions in Multiple Sclerosis https://onlinelibrary.wiley.com/doi/10.1002/ana.26441 STUDY: Decreased Neurofilament Light Chain Levels in Estriol-Treated Multiple Sclerosis https://onlinelibrary.wiley.com/doi/10.1002/acn3.51622 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 254 Guest: Erin Martin Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
30:37 07/11/2022
Episode 253: Managing Grief and MS with Dr. Rosalind Kalb
Everybody remembers the day -- sometimes, even the moment -- when they were diagnosed with MS. And in that moment, you may not have known very much about living with MS, but you probably felt like everything was about to change. One of the most common emotional responses to MS is grief. Joining me to talk about the relationship between grief and MS, as well as share some specific steps and strategies that you can take to process and manage grief in a healthy way is clinical psychologist Dr. Rosalind Kalb. Dr. Kalb has specialized in MS care and education for almost 40 years. She's a past Vice-President of the Professional Resource Center at the National MS Society. And currently, Dr. Kalb is the Senior Programs Consultant for Can Do MS. We'll also share the details of the experiments conducted by two German scientists that may shed important light on the process of myelin repair. We'll tell you what a research team learned from the largest MS fatigue study ever conducted in the United Kingdom. We'll highlight some of the changes to the updated guidelines for diagnosing and treating MS in the U.K. And we'll share the results of an extension study of Kesimpta presented last week at the annual meeting of the European Academy of Neurology. We have a lot to talk about! Are you ready for RealTalk MS??! Grief and MS   :22 Scientists may have discovered two proteins that stop myelin repair  1:26 Researchers share results of the largest MS fatigue study in the U.K.  3:39 Updated guidelines for diagnosing and treating MS in the U.K.  6:31 Kesimpta extension study participants show no evidence of disease activity after 4 years  8:57 Dr. Rosalind Kalb discusses grief and MS  11:42 Share this episode  30:03 Download the RealTalk MS app for your iOS or Android device   30:24 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  https://realtalkms.com/253 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: jon@realtalkms.com 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 The Extracellular Matrix Proteins Tenascin-C and Tenascin-R Retard Oligodendrocyte Precursor Maturation and Myelin Regeneration in Cuprizone-Induced Long-Term Demyelination Animal Model https://www.mdpi.com/2073-4409/11/11/1773/htm Fatigue in Multiple Sclerosis: A UK MS-Register Based Study https://sciencedirect.com/science/article/pii/S2211034822004655 Updated NICE Guidelines -- Multiple Sclerosis in Adults: Management https://nice.org.uk/guidance/ng220 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 253 Guest: Dr. Rosalind Kalb Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
31:36 07/04/2022
Episode 252: The Journey from MS Diagnosis to Podcaster to Patients Getting Paid with Kathy Reagan Young
When I began thinking about launching RealTalk MS, one of the first things I did was listen to other podcasts for the MS community. Five years ago, there weren't nearly as many podcasts focused on MS as there are today, but one of the podcasts I listened to was FUMS. And after listening to that podcast, I remember feeling inspired about moving forward with my plans for launching this podcast. Joining me to talk about her journey from being diagnosed with MS to launching her podcast and learning how patients get paid is the voice and energy behind the FUMS podcast, Kathy Reagan Young. We're also talking about a new venture from France, aimed at myelin repair. We'll share the details of a treatment for urinary incontinence for people living with MS that will soon be available in European Union countries. And we'll tell you about the first robotic exoskeleton that's received FDA clearance for use by people with MS. (And we'll tell you why that's going to make a real difference for some people living with progressive MS!) We have a lot to talk about! Are you ready for RealTalk MS??! 250 Episodes -- 1.500,000 Downloads and counting!   :22 FIND Therapeutics and SATT Connectus collaborate on myelin repair 2:14 Dysport receives favorable opinion from the EU  3:28 FDA grants clearance for robotic exoskeleton use by people with MS  6:09 Kathy Reagan Young's journey from diagnosis to giving MS the finger and learning how patients get paid  8:45 Share this episode  31:12 Download the RealTalk MS app for your iOS or Android device   31:32 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  https://realtalkms.com/252 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: jon@realtalkms.com 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: Efficacy and Safety of AbobotulinumtoxinA in Patients with Neurogenic Detrusor Overactivity Incontinence Performing Regular Clean Intermittent Catheterization: Pooled Results of Two Phase 3 Randomized Studies (CONTENT1 and CONTENT2) https://sciencedirect.com/science/article/pii/S03022838220116803 RealTalk MS #198: Dr. Brian Sandroff Shares the Results of Kessler Foundation's Robotic Exoskeleton-Assisted Exercise Pilot Study https://realtalkms.com/198 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 252 Guest: Kathy Reagan Young Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
32:44 06/27/2022
Episode 251: MS in the LGBTQ+ Community with Dr. William Conte, Payshunz Nagashima, and Andreina Barnola
Health disparities, systemic inequities, and discrimination often stand in the way of gaining access to MS care for members of the LGBTQ+ community. As we explore some of the obstacles faced by members of the LGBTQ+ community in accessing healthcare, we'll gain the clinician's perspective in our conversation with MS specialist, Dr. William Conte. We'll hear about the experiences of a queer trans person living with MS when we talk with Payshunz Nagashima. And we'll learn about the National MS Society's efforts to broaden access to MS care for members of underserved communities when we speak with the MS Society's Director of Health Equity Initiatives, Andreina Barnola. We have a lot to talk about! Are you ready for RealTalk MS??! June is Pride Month   :22 Dr. William Conte discusses obstacles to MS care faced by members of the LGBTQ+ community  1:12 Payshunz Nagashima shares their experience as a queer transgender person living with MS  10:30 Andreina Barnola discusses the role of the National MS Society in improving access to MS care for members of underserved communities  20:20 Share this episode  26:09 Download the RealTalk MS app for your iOS or Android device   26:30 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/251 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: jon@realtalkms.com 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 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 251 Guests: Dr. William Conte, Payshunz Nagashima, and Andreina Barnola Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
27:43 06/20/2022
Episode 250: At the Consortium of MS Centers Annual Meeting with Dr. Saud Sadiq, Dr. Kathy Zackowski and Marijean Buhse, PhD, RN, NP-C, MSCN
One afternoon during the Consortium of Multiple Sclerosis Centers Annual Meeting, I set up my equipment at the National MS Society's booth in the conference exhibit hall and recorded some conversations with a few old friends and a few new friends of the podcast. In this week's episode, we'll hear a couple of those conversations. Before I left for the conference, I had a chance to catch up with Dr. Saud Sadiq. So, we'll begin this episode with an update on his mesenchymal stem cell clinical trial and the unprecedented outcome he's seeing. We'll talk with Dr. Kathy Zackowski and get her impressions of some of the conference presentations that got her attention. And we'll hear from Marijean Buhse as she recaps what I found to be an important presentation on shared decision-making. We have a lot to talk about! Are you ready for RealTalk MS??! We're at the Consortium of Multiple Sclerosis Centers Annual Meeting!   :22 Dr. Saud Sadiq Updates Us on His Mesenchymal Stem Cell Clinical Trial   1:43 Dr. Kathy Zackowski Discusses the Conference Presentations That Caught Her Attention  10:44 Marijean Buhse Recaps Her Conference Presentation on Shared-Decision Making  23:27 Share this episode  33:13 Download the RealTalk MS app for your iOS or Android device   33:34 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/250 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: jon@realtalkms.com 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 RealTalk MS Episode 215: Stem Cell Therapy for MS with Dr. Jeffrey Cohen https://realtalkms.com/215 The National MS Society Presents the Black MS Experience Summit https://www.nationalmssociety.org/Resources-Support/Library-Education-Programs/Black-MS-Experience iConquer MS Survey for MS Caregivers https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers iConquer MS Survey for Researchers and Healthcare Providers https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers 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 250 Guests: Dr. Saud Sadiq, Dr. Kathy Zackowski, Marijean Buhse, PhD, RN, NP-C, MSCN Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
34:46 06/14/2022
Episode 249: The Ball Came Out with Tyler Campbell
In 2007, Tyler Campbell was a running back at San Diego State, looking forward to a real shot at a career in the NFL. Instead, Tyler's life was turned upside down by an MS diagnosis. For some people, that would have been the end of the story. For Tyler, it was only the beginning.  In this week's episode, Tyler Campbell talks about his transformational journey from the football field to becoming a motivational and inspirational leader in the MS movement. We have a lot to talk about! Are you ready for RealTalk MS??! I met a real difference-maker!   :22 My conversation with Tyler Campbell   1:12 Share this episode  26:56 Download the RealTalk MS app for your iOS or Android device   27:16 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/249 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: jon@realtalkms.com 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 The National MS Society Presents the Black MS Experience Summit https://www.nationalmssociety.org/Resources-Support/Library-Education-Programs/Black-MS-Experience iConquer MS Survey for MS Caregivers https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers iConquer MS Survey for Researchers and Healthcare Providers https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers 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 249 Guest: Tyler Campbell Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
28:27 06/07/2022
Episode 248: Pregnancy and MS with Dr. Annette Langer-Gould
Starting a family is a big step for anyone. And when you're living with MS and you're on MS medications along with other symptom management medications, planning a family creates a lot of questions about what's safe and what's not. Dr. Annette Langer-Gould, a clinician-scientist and MS specialist in the Kaiser-Permanente health system, joins me to answer questions about how to safely and successfully navigate conception, pregnancy, and the postpartum period with MS. We'll also get a briefing from Principal Investigator Dr. Jiwon Oh on the long-term extension study of Tolebrutinib, an investigational MS medication that's part of a whole new category of MS medications.  And we're sharing details of the 2022 Black MS Experience Summit, taking place June 15-16. Find out how and where to register for this free event! We have a lot to talk about! Are you ready for RealTalk MS??! I'm heading to the Consortium of MS Centers Annual Meeting   :22 Dr. Jiwon Oh discusses the long-term extension study of Tolebrutinib  1:02 The Black MS Experience Summit is happening June 15-16  11:01 Can-Do MS is hosting a webinar on "Bowel and Bladder: How to Find Confidence and Control"  12:03 Dr. Annette Langer-Gould discusses pregnancy and MS  13:01 Share this episode  31:00 Download the RealTalk MS app for your iOS or Android device   31:20 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/248 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: jon@realtalkms.com 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 The National MS Society Presents the Black MS Experience Summit https://www.nationalmssociety.org/Resources-Support/Library-Education-Programs/Black-MS-Experience Can Do MS Webinar Information and Registration https://cando-ms.org/webinar iConquer MS Survey for MS Caregivers https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers iConquer MS Survey for Researchers and Healthcare Providers https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers 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 248 Guests: Dr. Jiwon Oh and Dr. Annette Langer-Gould Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy  
32:32 05/31/2022
Episode 247: Biomarkers Can Help Diagnose MS, Predict MS, and Telegraph MS Progression with Dr. Tanuja Chitnis
Think about how much faster, easier, cheaper, and less invasive it would be if MS could be diagnosed by a simple blood test.  Scientists have identified biomarkers that can be used to diagnose MS and even predict MS before someone experiences any symptoms. Biomarkers may even be used to predict MS progression before it occurs.  Joining me to discuss how biomarkers may change the way MS is diagnosed and treated is Dr. Tanuja Chitnis, a Professor of Neurology at Harvard Medical School, as well as the Director of the CLIMB Study and the Translational Neuroimmunology Research Center at Brigham and Women's Hospital.  We're also talking about a recent breakthrough in myelin repair. We're sharing all the details about how you can participate in World MS Day on May 30th. We'll tell you about a report commissioned by the National Academy of Medicine that takes a close look at the challenges of identifying credible health information in social media.  And if you're an MS caregiver, healthcare professional, or researcher, we'll give you the details of an important survey that you can participate in. We have a lot to talk about! Are you ready for RealTalk MS??! Biomarkers can change everything   :22 May 30th is World MS Day  1:53 Lab-made molecule is shown to promote myelin repair in preclinical models of MS  3:23 National Academy of Medicine weighs in on the challenges of finding credible sources of health information in social media    5:03 An important survey for MS caregivers, healthcare professionals, and researchers  11:34 Dr. Tanuja Chitnis discusses biomarkers that may fundamentally change how MS is diagnosed and treated  13:38 Share this episode  28:23 Download the RealTalk MS app for your iOS or Android device   28:43 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  https://realtalkms.com/247 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: jon@realtalkms.com 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 Report: Identifying Credible Sources of Health Information in Social Media: Principles and Attributes https://nam.edu/identifying-credible-sources-of-health-information-in-social-media-principles-and-attributes World MS Day https://worldmsday.org iConquer MS Survey for MS Caregivers https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers iConquer MS Survey for Researchers and Healthcare Providers https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers 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 247 Guests: Dr. Tanuja Chitnis Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
29:55 05/24/2022
Episode 246: The High Cost of MS Medications with Steffany Stern
When my wife was diagnosed with MS in 1997, the annual cost of her MS medication was $9,000. Today, the annual cost of that same medication is $110,000. We cannot allow the insanity associated with the cost of MS medications to continue. Joining me to discuss the impact of the outrageously high cost of MS medications -- and what each of us can do about it -- is the National MS Society's Vice-President of Advocacy, Steffany Stern. We're also talking about a Phase 1 clinical trial for an investigational Epstein-Barr Virus vaccine (and why that matters to everyone living with MS). We'll tell you about a study that may have identified a biomarker for MS-related fatigue. We're also sharing the results of a study that identified which stress-reducing activities can help reduce MS-related depression and fatigue. And we'll tell you about a study that identified the economic benefits of starting MS medications early. We have a lot to talk about! Are you ready for RealTalk MS??! The (HIGH!) Cost of MS Medications   :22 NIH Announces Phase I Clinical Trial of Investigational EBV Vaccine 4:21 Study identifies a potential biomarker for MS fatigue  6:04 Study identifies stress-reducing activities that lower MS-related depression and fatigue    8:37 Study shows the economic benefits of starting MS medications early  11:25 Steffany Stern discusses the impact of the cost of MS medications   14:16 Share this episode  32:10 Download the RealTalk MS app for your iOS or Android device   32:30 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/246 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: jon@realtalkms.com 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: You Can Help Bring MS Medications Into Reach https://nationalmssociety.org/Treating-MS/Medications/Make-MS-Medications-Accessible/Take-Action RealTalk MS Ep.229: Evidence Shows MS Is Triggered by the Epstein-Barr Virus with Dr. Kassandra Munger and Dr. AJ Joshi https://realtalkms.com/229 RealTalk MS Episode 231: Evidence Shows EBV Triggers MS: Understanding this Breakthrough Research with Dr. Bruce Bebo https://realtalkms.com/231 Cerebrospinal Fluid Amyloid Precursor Protein as a Potential Biomarker for Fatigue in Multiple Sclerosis: A Pilot Study https://sciencedirect.com/science/article/pii/S2211034822003583 SURVEY: Undertaking Specific Stress-Reducing Activities are Associated with Reduced Fatigue and Depression, And Increased Mastery, in People with Multiple Sclerosis https://sciencedirect.com/science/article/pii/S2211034822003169 Early vs Late Treatment Initiation in Multiple Sclerosis and Its Impact on Cost of Illness: A Register-Based Prospective Cohort Study in Sweden https://pubmed.ncbi.nlm.nih.gov/35496759 iConquer MS Survey for MS Caregivers https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers iConquer MS Survey for Researchers and Healthcare Providers https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers 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 246 Guests: Steffany Stern Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
33:42 05/17/2022
Episode 245: The Journey to an MS Diagnosis with Dr. Michael Robers
For some, the journey to their MS diagnosis is relatively quick and straightforward. For others, it can be lengthy and convoluted, sometimes  taking years. Joining me to talk about some of the twists and turns that can pop up on the road to being diagnosed with MS is Dr. Michael Robers, a neurologist in the Multiple Sclerosis Program and an assistant professor in the Department of Neurology at Barrow Neurological Institute. We're also talking about a study that measured MS prevalence among Black, White, Hispanic, and Asian people. We'll share results of a survey that looked at cannabis use among Canadians living with MS. We're also sharing results of a survey that looked at where Americans living with MS get their information about cannabis. If you're an MS caregiver, healthcare professional, or researcher, we'll give you the details about an important survey that you can participate in. And we're even taking a moment for a special thank you! We have a lot to talk about! Are you ready for RealTalk MS??! A quick look at the numbers and a heartfelt thank you!   :22 A date that each person remembers 2:59 Study looks at MS prevalence among different racial and ethnic groups  4:36 Survey results show cannabis use among Canadians with MS    7:41 Where do you get your information?  10:07 Survey results show where Americans with MS get their information and guidance about cannabis  11:20 An important survey for MS caregivers, healthcare professionals, and researchers  14:37 Dr. Michael Robers discusses the journey to an MS diagnosis  17:03 Share this episode  31:20 Download the RealTalk MS app for your iOS or Android device   31:41 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/245 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: jon@realtalkms.com 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: Racial and Ethnic Disparities in Multiple Sclerosis Prevalence https://n.neurology.org/content/98/18/e1818 SURVEY: Medical Cannabis Used in Canadians with Multiple Sclerosis https://www.msard-journal.com/article/S2211-0348(22)00153-5/fulltext SURVEY: Sources of Cannabis Information and Medical Guidance for Neurologic Use: NARCOMS Survey of People Living with Multiple Sclerosis https://cp.neurology.org/content/12/2/102 iConquer MS Survey for MS Caregivers https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers iConquer MS Survey for Researchers and Healthcare Providers https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers 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 245 Guests: Dr. Michael Robers Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
32:53 05/10/2022
Episode 244: Financial Planning For People Living with MS with Financial Advisor Dick Bell
Planning for your financial future is good advice for everyone. But when you're living with MS, financial planning is an important part of the game plan for living your best life. Joining me to talk about the things you'll want to keep in mind as you develop your personal financial roadmap is Dick Bell, a professional financial advisor who has worked with more than 600 clients who are living with MS. We're also talking about how Russia's invasion of Ukraine is impacting MS clinical research. We'll tell you about a study that's focusing on a novel approach to promoting remyelination. We're sharing the results of a study that identified a biomarker that may predict future MS disease progression.  And we'll share survey results that show all the ways that MS can impact life. We have a lot to talk about! Are you ready for RealTalk MS??! How Russia's invasion of Ukraine is impacting MS clinical research   1:35 A study in the U.K. will test a novel approach to promoting remyelination:  3:27 Study identifies a biomarker that may predict future MS disease activity  7:26 FDA awards Breakthrough Device Designation to a technology that may speed MS diagnosis and predict future disease activity   9:56 Survey results show all the ways MS impacts your life  11:20 Financial advisor Dick Bell discusses your long-term financial strategy for living with MS  15:39 Share this episode  28:05 Download the RealTalk MS app for your iOS or Android device   28:25 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/244 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: jon@realtalkms.com 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 CCMR Two: A Phase IIa, Randomised, Double-Blind, Placebo-Controlled Trial of the Ability of Metformin and Clemastine to Promote Remyelination in People with Relapsing-Remitting Multiple Sclerosis Already on Disease-Modifying Therapy https://clinicaltrials.gov/ct2/show/NCT05131828 STUDY: Prognostic Value of Serum Filament Light Chain for Disease Activity and Worsening in Patients with Relapsing Multiple Sclerosis: Results from the Phase 3 ASCLEPIOS I and II Trials https://frontiersin.org/articles/10.3389/fimmu.2022.852563/full iConquer MS Survey for MS Caregivers https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers iConquer MS Survey for Researchers and Healthcare Providers https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers 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 244 Guests: Dick Bell Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
29:37 05/03/2022
Episode 243: The Economic Burden of MS with Dr. Bruce Bebo and Bari Talente
Living with MS is expensive. And if you're curious about how expensive living with MS is, why it's so expensive, and what can be done about it, then you're going to be interested in the results of a study that was commissioned by the National MS Society. Joining me to talk about what this study revealed and what it means to individuals and families affected by MS are Dr. Bruce Bebo, the Executive Vice-President of Research at the National MS Society, and the MS Society's Executive Vice-President of Advocacy and Healthcare Access, Bari Talente. We're also talking about a study that reveals a connection between MS severity and geography. Have you ever wondered why some people develop severe MS while others don't? We're sharing the details of a study that's hoping to answer that question. And if you're a caregiver for someone who's living with MS, or you're a healthcare provider who interacts with MS caregivers, or you're a researcher interested in MS caregivers, we'll explain why iConquer MS would like just a few minutes of your time. We have a lot to talk about! Are you ready for RealTalk MS??! Measuring the financial impact of MS  :22 A study shows MS severity correlates to geographic latitude  1:47 A new study will try to understand why some people develop severe MS while others don't  4:13 iConquer MS is expanding to include MS caregivers but first they need your help  7:26 Dr. Bruce Bebo and Bari Talente break down the results of a study that focused on the cost of living with MS   9:56 Share this episode  29:04 Download the RealTalk MS app for your iOS or Android device   29:25 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/243 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: jon@realtalkms.com 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: Economic Burden of Multiple Sclerosis in the United States: Estimate of Direct and Indirect Costs https://n.neurology.org/content/early/2022/04/13/WNL.0000000000200150 STUDY: Association of Latitude and Exposure to Ultraviolet B Radiation With Severity of Multiple Sclerosis: An International Registry Study https://n.neurology.org/content/early/2022/04/11/WNL.0000000000200545 University at Buffalo Multiple Sclerosis Research Challenge: Contribute to the CASA-MS Study https://crowdfunding.buffalo.edu/project/29733 iConquer MS Survey for MS Caregivers https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers iConquer MS Survey for Researchers and Healthcare Providers https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers 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 243 Guests: Dr. Bruce Bebo and Bari Talente Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
30:37 04/26/2022
Episode 242: No Masks or Proof of Vax? Staying Safe in the Next Normal If You're Living with MS with Dr. Nancy Sicotte
Mask mandates have mostly ended, and bars, restaurants, public buildings, and other businesses no longer require proof of vaccination. It looks like the COVID-19 pandemic is over. Except for the fact that we're seeing cases of the latest COVID subvariant continue to rise in cities across the country and around the world. So, how do we navigate this post-pandemic world? And if you happen to be immunocompromised, how do you stay safe? Joining me as she has throughout the pandemic, with an update including the steps you can take to stay safe as the world re-opens is Dr. Nancy Sicotte. Dr. Sicotte is a professor and Chair of the Department of Neurology at Cedars-Sinai Medical Center in Los Angeles. Dr. Sicotte also Chairs the National MS Society’s National Medical Advisory Committee and she leads the MS Society's COVID-19 Advisory Group. We're also talking about a workshop that brought together a group of global experts to weigh in on autologous hematopoietic stem cell transplantation (aHSCT) as a viable treatment for MS. We're sharing the details about an upcoming clinical trial that will test a myelin-restoring treatment for people with relapsing-remitting MS. Evidence from multiple studies shows that members of the Black and Hispanic communities who live with MS can experience a more severe disease course and a higher disability burden. We'll share the details of a presentation from the Academy of American Neurology annual meeting that sheds new light on what may be driving these disparities.  And we'll tell you how you can register to participate in the National African-Americans with MS Registry. We have a lot to talk about! Are you ready for RealTalk MS??! Welcome to the Next Normal!  :22 ECTRIMS hosts an Autologous Hematopoietic Stem Cell Transplantation (aHSCT) workshop  1:45 FDA Approves clinical trial for a myelin-restoring treatment  6:04 New data may explain racial and ethnic disparities in MS disease severity and treatment  7:45 The National African Americans with MS Registry  10:13 Dr. Nancy Sicotte explains what people with MS need to know to stay safe as they re-enter a post-pandemic world   11:52 Share this episode  32:31 Download the RealTalk MS app for your iOS or Android device   32:51 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/242 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: jon@realtalkms.com 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 ECTRIMS Focused Workshop: Autologous Hematopoietic Stem Cell Transplantation For Treatment of MS and Related Diseases https://ectrims.eu/ongoing-educational-programmes/focused-workshops National MS Society Recommendations for aHSCT-Bone Marrow Transplant for MS https://nationalmssociety.org/About-the-Society/News/National-MS-Society-Releases-Recommendations-for-a National African Americans with MS Registry https://www.naamsr.org 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 242 Guests: Dr. Nancy Sicotte Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
34:03 04/19/2022
Episode 241: American Academy of Neurology Annual Meeting Recap with Prof. Xavier Montalban
I spent last week attending the American Academy of Neurology (AAN) Annual Meeting and in this week's episode of RealTalk MS, I'm sharing an overview of what I saw and what I heard. Each year at the AAN meeting, the American Academy of Neurology and the National MS Society award the John Dystel Prize for MS Research. Joining me on today's podcast is this year's recipient of the Dystel Prize, Professor Xavier Montalban. We're also talking about how the COVID-19 pandemic has affected MS research and clinical care. We're sharing encouraging news about two potential disease-modifying therapies. And we'll share some of the over-arching themes that kept popping up in a number of different meetings, presentations, and conversations during the AAN annual meeting. We have a lot to talk about! Are you ready for RealTalk MS??! The impact of the pandemic on MS research and clinical care   :53 Results of Phase 2 extension study show Evobrutinib effective in reducing relapse rates in relapsing forms of MS   4:53 Results of Ublituximab Phase 3 post-hoc analyses announced    7:16 Dr. Stephen Hauser receives the Scientific Breakthrough Award  9:25 The importance of making complex science easy to understand for people affected by MS  10:29 The importance of increasing clinical trial participation among members of minority communities  12:48 The importance of caring for the caregiver  14:04 John Dystel Prize for MS Research awarded to Prof. Xavier Montalban  15:40 My conversation with John Dystel Prize recipient Professor Xavier Montalban  16:25 Share this episode  24:51 Have you downloaded the RealTalk MS app?   25:12 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/241 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: jonstrum@realtalkms.com 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 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 241 Guests: Professor Xavier Montalban Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
26:24 04/12/2022
Episode 240: Hypnosis and MS with Dr. Mark Jensen
Research has shown that hypnosis is an effective treatment for managing chronic pain, including pain associated with MS.  My guest, Dr. Mark Jensen, is a Professor and Vice-Chair of the Department of Rehabilitation Medicine at the University of Washington. Dr. Jensen has devoted his career to developing effective treatments for pain and is an expert on hypnotic interventions. We're also talking about a research team that may have learned how to successfully penetrate the blood-brain barrier (and why that could be great news for people living with MS!). We'll share the results of a 10-year study in France that showed very positive outcomes for people living with highly active relapsing-remitting MS. We'll tell you about 66 research projects that have just been funded by the MS Society of Canada. And we'll share results from a survey that identify pandemic-specific depression and anxiety among people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! Researchers may have found a way through the blood- brain barrier   1:17 10-year study reveals surprising results   4:19 MS Society of Canada announces funding for 66 research projects    8:07 Researchers identify pandemic-related depression among people living with MS  9:11 Dr. Mark Jensen discusses treating MS-related chronic pain with hypnosis  12:43 Share this episode  30:58 Have you downloaded the RealTalk MS app?   31:19 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/240 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: jonstrum@realtalkms.com 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: Endothelial Unc5B Controls Blood-Brain Barrier Integrity https://www.nature.com/articles/s41467-022-28785-9 STUDY: Ten-Year Follow-Up After Mitoxantrone Induction For Early Highly Active Relapsing-Remitting Multiple Sclerosis: An Observational Study of 100 Consecutive Patients https://sciencedirect.com/science/articles/abs/pii/5003578722000431 MS Society of Canada Research Funding Announcement https://mssociety.ca/information-for-researchers/funding-announcements National MS Society MS Navigator Contact Info Phone: (800) 344-4867 Email: contactusnmss@nmss.org 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 240 Guests: Dr. Mark Jensen Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
32:49 04/05/2022
Episode 239: New Research Goals Set by the International Progressive MS Alliance with Dr. Robert Fox
A decade ago, the International Progressive MS Alliance didn't exist. Today, it can be credited with changing the global conversation about progressive MS research, elevating the progressive MS research agenda and moving the work forward. A few weeks ago, the Alliance announced the details of an ambitious strategic plan that will guide their work over the next 3 years.  Joining me to talk about the new goals that were set by the Alliance, and what that means for people affected by progressive MS, is the Chair of the Alliance's Scientific Steering Committee, Dr. Robert Fox. The MS International Federation conducted a survey and we're wondering whether the responses have raised a larger question? We're also talking about a study that showed how an online mindfulness program significantly improved depression for people living with MS. We're sharing study results that show your nose knows when your DMT is working well for you. We'll also share the details about an exciting undertaking at the University of Colorado that may lead to treating people so that they completely avoid the symptoms of MS. And we'll tell you about a small trial that demonstrated the effectiveness of an experimental stem cell therapy as a potential treatment for progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! International Progressive MS Alliance unveils a new 3-year strategic plan  :22 Survey results raise a larger question -- How do we share MS research news with people affected by MS???  1:04 Online mindfulness provides significant improvement for managing depression among people with MS    16:14 Using your nose to determine the efficacy of your disease-modifying therapy  8:33 NeuroGenesis cell therapy shows promise as a potential treatment for progressive MS  14:14 Dr. Robert Fox discusses what's next for the International Progressive MS Alliance  17:28 Share this episode  28:07 Have you downloaded the RealTalk MS app?   28:27 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/239 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: jonstrum@realtalkms.com 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 International Progressive MS Alliance https://progressivemsalliance.org STUDY: A Randomized Controlled Trial of a Web-Based Mindfulness Programme for People With MS With and Without a History of Recurrent Depression https://journals.sagepub.com/doi/10.1177/13524585211068002 STUDY: Olfactory Threshold Predicts Treatment Response in Relapsing Multiple Sclerosis https://journals.sagepub.com/doi/10.1177/1354285221079744 STUDY: Effects of Mesenchymal Stem Cell Transplantation on Cerebrospinal Fluid Biomarkers in Progressive MS https://academic.oup.com/stcltm/article/11/1/55/6528889 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 239 Guests: Dr. Robert Fox Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
29:40 03/29/2022
Episode 238: The Pathways to Cures Research Roadmap with Dr. Carol Whitacre and Prof. Alan Thompson
The Pathways to Cures initiative is focused on stopping MS progression, restoring lost function, and ending MS forever. This bold initiative has already been endorsed by more than 20 MS research and patient organizations around the world. And now, the publication of the Pathways to Cures Research Roadmap has brought us to a pivotal moment in the history of MS research. Joining me in this episode of RealTalk MS are two very special guests, Dr. Carol Whitacre and Professor Alan Thompson. We're taking a close look at what Pathways to Cures is all about, where we are on the Pathways to Cures Research Roadmap, and what this initiative means for people affected by MS. Dr. Whitacre is the former Senior Vice-President of Research at The Ohio State University, and the current Chair of the National MS Society's Scientific Advisory Committee. Professor Thompson is a clinician scientist who has been the recipient of virtually every high honor and award that's given in the field of multiple sclerosis research, including the John Dystel Prize for MS Research in 2017, the Sobek Research Prize in 2020, and the 2021 Charcot Award, which recognizes a lifetime of achievement in outstanding research into understanding and treating MS. We have a lot to talk about! Are you ready for RealTalk MS??! The Pathways to Cures Research Roadmap  :22 Dr. Carol Whitacre discusses the significance of the Pathways to Cures initiative  3:34 Prof. Alan Thompson reviews the status of MS research to stop progression, restore lost function, and end MS, then looks ahead to next steps in the Pathways to Cures research roadmap    16:14 Share this episode  33:52 Have you downloaded the RealTalk MS app?   34:12 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/238 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: jonstrum@realtalkms.com 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 RealTalk MS Episode 125: The Pathways to Cures Think Tank  https://realtalkms.com/125 Pathways to Cures https://pathwaystocures.org 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 238 Guests: Dr. Carol Whitacre and Prof. Alan Thompson Tags: MS, MSAwareness MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
35:29 03/22/2022
Episode 237: Raising MS Awareness with Marti Hines
It's MS Awareness Week and my guest is Marti Hines. Marti is a successful event producer, entrepreneur, film producer, and director. She was diagnosed with MS in 2018, and Marti has been very transparent in sharing the highs and lows of her MS journey on her social channels.  Like so many people living with MS, Marti has an amazing energy and a seemingly endless supply of resilience. You're going to enjoy meeting her.  We're also talking about why increasing diversity in clinical trials is so vital. And we're highlighting the Consensus Statement on Health Equity in Clinical Trials and Real-World Evidence Data Collection that was released by the National MS Society's Corporate Healthcare Roundtable. You'll learn about the Cost Plus Drug Company, billionaire Mark Cuban's effort to disrupt the prescription drug market by offering generic drugs that truly are affordable. And we'll share the results of a study that shows that a keto diet may be beneficial for people living with relapsing MS. We have a lot to talk about! Are you ready for RealTalk MS??! It's MS Awareness Week!  :22 MS Society Corporate Healthcare Roundtable issues a consensus statement on health equity in clinical trials  1:03 Mark Cuban Cost Plus Drug Company is compassionate capitalism in action  5:59 Keto diet shows benefits for people with  relapsing MS  11:18 Marti Hines talks about why sharing her MS journey is important  14:51 Share this episode  26:08 Have a minute? Leave a rating and review for RealTalk MS!   26:28 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/237 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: jonstrum@realtalkms.com 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 MS Awareness Week https://nationalmssociety.org/msawareness National MS Society Corporate Healthcare Roundtable Consensus Statement on Health Equity in Clinical Trials and Real-World Evidence Data Collection  https://nmsscdn.azureedge.net/NationalMSSociety/media/MSNationalFiles/Documents/Corporate-Healthcare-Roundtable_Consensus-Statement-on-Health-Equity-in-Clinical-Trials-and-Data-Collection-(2).pdf National MS Society Public Policy Conference Replay https://nationalmssociety.org/ppc Mark Cuban Cost Plus Drug Company https://costplusdrugs.com STUDY: Ketogenic Diet as a Strategy for Improved Wellness and Reduced Disability in Relapsing Multiple Sclerosis https://index.mirasmart.com/aan2022/PDFfiles/AAN2022-000622.html 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 237 Guests: Marti Hines Tags: MS, MSAwareness MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy
27:45 03/15/2022