Episode 371: A Difference-Making Mobility Device with Dee Ecklund and BE Alink
RealTalk MS
In the seven years that I've been hosting RealTalk MS, no one has ever described a mobility device as life-changing. That is until listener Dee Ecklund reached out to tell me about her experience with the Alinker. One of my goals in producing this podcast is to introduce the RealTalk MS listener community to people who are difference-makers. And Dee's initial DM led to my conversation with Dee and the inventor of the Alinker, a true difference-maker, BE Alink. The National MS Society's 3rd annual Hispanic/Latinx MS Experience Summit is just two days away! We're sharing all the...
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ECTRIMS Extra: Results from the Tolebrutinib Phase 3 Clinical Trial for Relapsing MS with Dr. Jiwon Oh
RealTalk MS
With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Jiwon Oh. Dr. Oh is a neurologist, scientist, and the Medical Director of the Barlo Multiple Sclerosis Program at St. Michael’s Hospital in Ontario, Canada. Dr. Oh is also the Principal Investigator in Gemini, the Phase 3...
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Episode 370: Understanding the Updated Pathways to Cures Research Roadmap with Dr. Bruce Bebo and Shawna Golden
RealTalk MS
In 2020, the National MS Society convened the Pathways to Cures Think Tank. I shared news and interviews from what I considered a historic meeting back in of RealTalk MS. The information shared and the work generated by that Think Tank led to the Pathways to Cures Global Summit in 2023. In and of RealTalk MS, I shared news and interviews from what I described as yet another historic meeting. The Pathways to Cures Research Roadmap has been updated, and I'm devoting this week's episode of RealTalk MS to my conversation with the National MS Society's Executive Vice-President of Research,...
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ECTRIMS Extra: Revisions to the Way MS is Diagnosed with Dr. Peter Calabresi
RealTalk MS
With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Peter Calabresi. Dr. Peter Calabresi is the Director of the Division of Neuroimmunology and the Director of the Multiple Sclerosis Center at Johns Hopkins Medicine. He is the principal investigator on several clinical trials...
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ECTRIMS Extra: Rachel Horne and Professor Kerstin Helwig
RealTalk MS
With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Rachel Horne and Professor Kerstin Hellwig. Professor Kerstin Hellwig is the 2024 recipient of the Rachel Horne Prize for Women's Research in MS. Professor Hellwig was honored at ECTRIMS for her pioneering research into...
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Episode 369: ECTRIMS 2024 with Kristine Werner Ozug and Dr. Bruce Bebo
RealTalk MS
ECTRIMS 2024, the largest MS research conference in the world concluded last week, and in this week's episode, we'll be hearing two slightly different perspectives on which news, announcements, and presentations stood out at this year's meeting. The ECTRIMS conference can feel almost overwhelming. You find yourself among 9 or 10 thousand other attendees, trying to determine which of the more than 1700 scientific presentations you want to learn more about. It's both a marathon and a sprint that seem to be taking place simultaneously. Kristine Werner Ozug is a member of the RealTalk MS...
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ECTRIMS EXTRA: New Course Descriptors for MS with Dr. Fred Lublin
RealTalk MS
With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Fred Lublin. Dr. Fred Lublin is the Director of the Corrine Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai. He participated in the development of the very first disease-modifying therapy that was approved...
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Episode 368: Living a More Purposeful Life with MS with Dr. Evan Smith
RealTalk MS
Living with the unpredictability of MS sometimes feels like riding a rollercoaster. As you experience the twists and turns of life with MS, you can sometimes feel unmoored from the person you thought you were. You can sense your priorities, motivations, and values shifting. And, in those moments, it becomes easy to lose your sense of purpose. Clinical assistant professor and rehabilitation psychologist at the University of Michigan, Dr. Evan Smith, joins me to discuss how to identify and reconnect with your core values and live a more purposeful and satisfying...
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Episode 367: Budgeting for Living with MS with Bruce McClary
RealTalk MS
Living with MS is expensive. A recent study funded by the National MS Society found the average cost of living with MS in the United States is $88,487 a year. Even with insurance, that can turn out to be a heavy lift. One thing you don't need is to be worrying about money while you're already worrying about MS. So, when I think about discussing budgeting and managing your personal finances when you're living with MS, I think we're really talking about preserving your quality of life. Joining me with strategies for budgeting and managing debt when you're living with MS is the Senior Vice...
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Episode 366: Medicare and MS -- Getting Your Ducks In a Row with Laquel Thomas
RealTalk MS
Most of us know Medicare as health insurance for Americans who are 65 or older, but when they qualify for Social Security disability benefits, people younger than 65 automatically qualify for Medicare. Today, between 25 and 30% of the people living with MS are Medicare beneficiaries. Whether you already have Medicare or you'll be signing up for Medicare in the future, getting the right coverage requires making some important choices. Licensed Medicare Advisor Laquel Thomas joins me with tips, strategies, and explanations for successfully navigating Medicare and getting the coverage...
info_outlineThe inequities associated with gaining access to quality healthcare are often discussed, and my guest this week has taken steps to address them. Dr. Jaime Imitola and his team at UCONN Health have created a tool called VISIBL-MS, a bilingual framework designed to increase doctors' and patients' awareness of the early signs of MS.
We'll also share the results of a study that clearly illustrate progression independent of relapse activity (PIRA).
We'll tell you about a small study that showed a positive outcome for people with progressive MS who received neural stem cell therapy.
We'll share details of a study that identified a panel of 20 blood-based proteins that have been shown to be predictive of MS disease activity. (And we'll tell you why that's a good thing for patients and researchers!)
And we're reminding you that we're just over 2 weeks away from CRUSH MS!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: VISIBL-MS :22
Study results provide evidence of PIRA 1:41
Stem cell therapy for progressive MS? 4:28
Researchers identify a panel of 20 proteins that are predictive of MS disease activity 7:19
We're just over 2 weeks away from CRUSH MS! 10:07
Dr. Jaime Imitola discusses how VISIBL-MS will increase doctors' and patients' awareness of the early signs of MS. 11:35
Share this episode 31:33
Have you downloaded the free RealTalk MS app? 31:53
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/358
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
VISIBL-MS: A Bilingual Educational Framework To Increase Awareness of Early Multiple Sclerosis
https://journals.sagepub.com/doi/10.1177/13524585241228739
STUDY: Acute Clinical Events Identified as Relapses with Stable Magnetic Resonance Imaging in Multiple Sclerosis
https://pubmed.ncbi.nlm.nih.gov/38949816
STUDY: Phase I Clinical Trial of Intracerebroventricular Transplantation of Allogeneic Neural Stem Cells in People with Progressive Multiple Sclerosis
https://www.sciencedirect.com/science/article/pii/S1934590923003934
STUDY: Inflammatory and Neurodegenerative Serum Protein Biomarkers Increase Sensitivity to Detect Clinical and Radiographic Disease Activity in Multiple Sclerosis
https://nature.com/articles/s41467-024-48602-9
CRUSH MS: Tickets and Info
https://crushms.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
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RealTalk MS Episode 358
Guests: Dr. Jaime Imitola