Episode 377: The Art of Hope with Lydia Emily
RealTalk MS
There are some people who, once you meet them, it's impossible to forget them. They seem to leave an indelible impression. Lydia Emily is one of those people. Whether it's through her art that occasionally escapes the canvas to be expressed as massive urban murals proclaiming End MS, or through her outspoken MS advocacy. Lydia Emily is a force. Now, along with co-author Lenlee Keep, Lydia Emily has channeled that energy into a book entitled, The Art of Hope: The Life and Art of Lydia Emily. Lydia Emily and her co-author, Lenlee Keep, join me this week to talk about the process of writing the...
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Special Episode: Pregnancy and MS with Dr. Riley Bove
RealTalk MS
MS affects almost 3 times as many women as men, often affecting women of childbearing age. In this special episode of RealTalk MS, Dr. Riley Bove answers some of the important questions about the impact of MS on a woman's pregnancy and the impact of pregnancy on a woman's MS. This special episode of RealTalk MS is sponsored by Viatris. SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: 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...
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Episode 376: Adding Dance, Music, and Art Therapy to Your MS Treatment Plan with Dr. Francois Bethoux
RealTalk MS
On this podcast, we tend to talk a lot about new technologies, emerging treatments, the most recently approved disease-modifying therapies, and even some DMTs that haven't yet been approved. And in the midst of all that cutting-edge research and evolving science, it's easy to lose sight of the fact that expressive therapies like dance and movement therapy, music therapy, and art therapy have all been shown to help promote self-efficacy, emotional well-being, and motor control in people living with MS. Dr. Francois Bethoux joins me on today's episode to discuss the benefits of...
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Episode 375: Managing Teenage MS with Dr. Ann Yeh
RealTalk MS
Being a teenager is hard. So, imagine for a moment that in addition to everything else that teenagers have to endure, you're a teenager who's been diagnosed with MS. Your ability to participate in after-school activities or just hang out with your friends is impacted by MS-related fatigue. The typical adolescent anxiety over something someone posted on social media evolves into depression. And cognitive issues begin to make it harder for you in the classroom. This is an unfortunate reality for many adolescents who are living with MS. Joining me to discuss how MS affects adolescents and how...
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Episode 374: Grieving When You're Living With MS with Dr. Holly Hendin
RealTalk MS
Learning to live with MS is learning to live with loss. For some, those losses may be minor and seem relatively insignificant. For others, those losses can be huge and life-altering. The definition of grief is an emotional response to a significant loss. It's not unusual to grieve over those things in your life that have been lost due to MS. In fact, healthy grieving is a necessary emotional step to moving forward in life. Dr. Holly Hendin, a faculty physician and psychiatrist at St. Joseph’s Hospital Medical Group Outpatient Behavioral Health in Phoenix, Arizona, joins me to explore...
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Episode 373: ECTRIMS Research Roundup Part 2 with Dr. Bruce Bebo
RealTalk MS
Now that he's had a chance to digest all of the research presented at ECTRIMS, Dr. Bruce Bebo, the National MS Society's Executive Vice President of Research, is back to share the key research presented at the largest MS research conference in the world. This episode of RealTalk MS is the perfect follow-up to my initial conversation with Bruce, which occurred just minutes after ECTRIMS ended. (If you missed our conversation, you may want to check out Episode 369 of RealTalk MS.) We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Part 2 of our coverage of ECTRIMS...
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Episode 372: Medicare Changes That Will Affect You in 2025 with Sarah Anderson
RealTalk MS
Open enrollment is underway! And if you're one of the 25% of people living with MS who get their coverage through Medicare, there are some major changes coming in 2025. So, it's especially important that you review your prescription drug coverage to make sure you're enrolled in the Medicare Part D plan that's best for you. Sarah Anderson, pharmacist and senior director of clinical resources and programming at the National MS Society, joins me to help us decipher those changes and navigate the sometimes confusing world of health insurance. We'll also tell you about a research team...
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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,...
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