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Past Podcast Episodes

Episode 403: Moving Toward a Biologically Based Description of MS with Dr. Bruce Bebo, Dr. Daniel Ontaneda, and Kathy Smith


Last week, the National Multiple Sclerosis Society and the European Committee for Treatment and Research in Multiple Sclerosis convened a meeting in Dublin, Ireland, to dive deeper into what a new framework for describing MS might look like.

There's still a tremendous amount of work to be done here. But, considering that whatever language is eventually adopted will affect every person living with MS, I want to keep you fully informed on this important work. So I'm devoting this entire episode of the podcast to sharing conversations I had with three of the attendees at the meeting in Dublin.

Welcome to Dublin

First, you'll hear from Dr. Bruce Bebo, the National MS Society's Executive Vice President of Research. Then, you'll hear from Dr. Daniel Ontaneda, a neurologist specializing in MS at the Cleveland Clinic, and, finally, you'll hear from Kathy Smith, who's lived with MS for the past 20 years.

As you listen to these conversations, I think you'll hear three slightly different perspectives, but you'll also hear some of the broad concepts and ideas around which there was a high level of agreement at our meeting.

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


This Week: A meeting to discuss moving to a biologically based description of MS  :22

Dr. Bruce Bebo discusses how a new framework for describing MS could impact MS research and people living with MS  3:45

Dr. Daniel Ontaneda describes some of the shortcomings of the current MS course descriptors and discusses how a new framework for describing MS could impact   people living with MS  17:34

Kathy Smith explains how current MS course descriptors fail to fully capture her experience as someone living with MS, and explains how new course descriptors could benefit people living with MS  26:24

What's next in the work to develop new course descriptors for MS  35:20

Share this episode  35:44

Have you downloaded the free RealTalk MS app?  36:03


SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/403

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

RealTalk MS Episode 279: A New Framework for Researching, Diagnosing, and Treating MS with Professor Tanja Kuhlmann
https://realtalkms.com/279

RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee
https://realtalkms.com/280

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 403
Guests: Dr. Bruce Bebo, Dr. Daniel Ontaneda, Kathy Smith

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Filed Under: Uncategorized

Episode 402: The Importance of Asserting Your Personal Style When You’re Living with MS with Jeri Zink Denz


If you're living with MS, you might experience days when it feels like you're losing your sense of who you are, as your sense of self gets redefined by your symptoms. Reasserting your personal style can be a powerful way to rediscover joy in who you are while reclaiming your identity.

Jeri Zink Denz lives with MS and works in the luxury fashion industry. She's always been passionate about fashion and personal style, and Jeri joins me to discuss how you can find and define your personal style, despite the challenges that MS may present.

We'll also explain the hidden outcome of the massive agency layoffs and drastic cuts in federal funding for healthcare research, and this is the outcome that can affect research for decades to come.

We're sharing the results of a study that may have identified a biomarker for rapid MS progression.

We'll tell you about the game-changing artificial intelligence project that received a $750,000 investment from the International Progressive MS Alliance.

And you'll find out how and where you can register for the upcoming Hispanic/Latinx MS Experience Summit.

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


This Week: Reasserting your personal style can be a powerful way to rediscover joy in who you are in spite of the challenges that MS may present.   :22

Layoffs + funding cuts = brain drain  1:08

Have researchers found a biomarker for rapid MS progression?  4:51

The International Progressive MS Alliance has invested $750,000 in what could be a game-changing AI project  9:09

The National MS Society's Hispanic/Latinx MS Experience Summit is just 8 days away  10:59

Jeri Zink Denz discusses why it's especially important (and even therapeutic!) to assert your personal style when you're living with MS  12:22

Share this episode  29:31

Have you downloaded the free RealTalk MS app?  29:50


SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/402

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

Become an MS Activist
Web: https://nationalmssociety.org/advocacy
Email: msactivist@nmss.org

STUDY: Broad Rim Lesions are a New Pathological and Imaging Biomarker for Rapid Disease Progression in Multiple Sclerosis
https://nature.com/articles/s41591-025-03625-7

International Progressive MS Alliance
https://progressivemsalliance.org

Hispanic/Latinx MS Experience Summit Info & Registration
https://nationalmssociety.org/resources/get-support/education-programs-and-library/hispanic-latinx-ms-experience

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 402
Guest: Jeri Zink Denz

Privacy Policy

 

Filed Under: Uncategorized

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