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...
info_outline ECTRIMS Extra: Results from the Tolebrutinib Phase 3 Clinical Trial for Relapsing MS with Dr. Jiwon OhRealTalk 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...
info_outline Episode 370: Understanding the Updated Pathways to Cures Research Roadmap with Dr. Bruce Bebo and Shawna GoldenRealTalk 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,...
info_outline ECTRIMS Extra: Revisions to the Way MS is Diagnosed with Dr. Peter CalabresiRealTalk 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...
info_outline ECTRIMS Extra: Rachel Horne and Professor Kerstin HelwigRealTalk 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...
info_outline Episode 369: ECTRIMS 2024 with Kristine Werner Ozug and Dr. Bruce BeboRealTalk 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...
info_outline ECTRIMS EXTRA: New Course Descriptors for MS with Dr. Fred LublinRealTalk 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...
info_outline Episode 368: Living a More Purposeful Life with MS with Dr. Evan SmithRealTalk 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...
info_outline Episode 367: Budgeting for Living with MS with Bruce McClaryRealTalk 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...
info_outline Episode 366: Medicare and MS -- Getting Your Ducks In a Row with Laquel ThomasRealTalk 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_outlineResearch is the engine that drives the future. And participating in MS research is not only vital to improving scientists' understanding of multiple sclerosis, it's also empowering. And the really good news is that you can participate in MS research from the comfort of your own home.
My guest this week is the Managing Director of the North American Research Committee on Multiple Sclerosis, Dr. Robert Fox. And we're taking a deep dive into the NARCOMS patient registry.
We'll also tell you about the latest version of AlphaFold, a highly advanced artificial intelligence model designed to help scientists design new drugs and target disease more effectively.
Evidence shows that the Epstein-Barr Virus (EBV) triggers MS. We're reviewing the results of a study that may help scientists better understand the relationship between EBV and MS.
The International Progressive MS Alliance upcoming webcast, Mobility Challenges in Progressive MS, takes place this Thursday, June 20th. Find out where you can register and why you won't want to miss this!
And we're just 6 weeks away from Crush MS, a fundraising event in Napa Valley, California that raises money to support MS research. I'll be there, and I hope you can join me! We're sharing all the details.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The NARCOMS Patient Registry :22
The most advanced AI on earth is focused on discovering new medications 1:40
Researchers learn that Epstein-Barr Virus re-activates and drives inflammation during an MS relapse 4:00
The Progressive MS Alliance hosts a live global webcast this Thursday, June 20th! 7:17
Crush MS is just 6 weeks away 8:39
Dr. Robert Fox takes us on a deep dive into the NARCOMS patient registry 10:08
Share this episode 26:12
Next Week: A special conversation with National MS Society President and CEO, Cyndi Zagieboylo 26:33
Have you downloaded the free RealTalk MS app? 27:17
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/355
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: [email protected]
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The NARCOMS Patient Registry
https://www.narcoms.org
STUDY: Multiple Sclerosis Patient-Derived Spontaneous B Cells Have Distinct EBV and Host Gene Expression Profiles In Active Disease
https://nature.com/articles/s41564-024-01699-6
REGISTER for the International Progressive MS Alliance Global Webcast: Mobility Challenges in Progressive MS
https://msif.org/webcast-mobility
Get Tickets for Crush MS
https://www.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
Download the RealTalk MS App for Android Devices
https://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 355
Guests: Dr. Robert Fox