RealTalk MS Jon Strum

To tell or not to tell. When it comes to disclosing your MS to friends and family, that is the question. Choosing when to disclose and to whom to disclose is a deeply personal decision. Joining me to talk about some of the risks and benefits of disclosing your diagnosis is Dr. Victoria Leavitt, a clinical neuropsychologist, researcher, and assistant professor of neuropsychology at Columbia University.

Well also tell you about a just-announced collaboration to develop an Epstein-Barr Virus vaccine (and we'll tell you why that could be a huge step toward ending MS forever!)
We're sharing the details behind the MS International Federation's application to have three MS disease-modifying therapies added to the World Health Organization's list of essential medicines.
We'll tell you how a study that tested a fall prevention program for people living with MS who used a wheelchair or scooter full-time may have failed...and yet succeeded.
We're sharing the results of a study that set out to determine whether people over 50 who were living with MS were increasing their use of health care services because of their MS or simply because they were aging.
And we'll tell you about a study that focused on the psychosocial impact of MS on children who had a parent living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: Disclosing Your MS  :22
Merck teams up with ModeX Therapeutics on an EBV vaccine  1:10
The MSIF applies to have 3 DMTs added to the WHO list of essential medicines   3:22
STUDY: A fall prevention program for people with MS who are full-time wheelchair or scooter users  6:47
STUDY: Health care usage among people over 50 who are living with MS  9:33
STUDY: The psychosocial impact of MS on children with a parent living with MS  12:02
Dr. Victoria Leavitt discusses the risks and rewards associated with disclosing your MS to friends and family   15:24
Share this episode  32:35
Have you downloaded the free RealTalk MS app?  32:55

SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/290
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
Editorial: Toward Equitable Access to Treatment for Multiple Sclerosis
https://thelancet.com/action/showPdf?pii=S1474-4422%2823%2900041-8
STUDY:  Online Delivery of the Individualized Reduction of Falls Intervention for Persons with Multiple Sclerosis Who Use a Wheelchair or Scooter Full-Time: A Pilot Study
https://meridian.allenpress.com/ijmsc/article/25/2/82/491441/Online-Delivery-of-the-Individualized-Reduction-of
STUDY: Outcomes and Health Care Service Use in Adults 50 Years and Older With and Without Multiple Sclerosis
https://meridian.allenpress.com/ijmsc/article/25/2/56/486192/Outcomes-and-Health-Care-Service-Use-in-Adults-50
STUDY: The Psychosocial Impact of Parental Multiple Sclerosis on Children and Adolescents: A Systematic Review
https://meridian.allenpress.com/ijmsc/article/25/2/63/487609/The-Psychosocial-Impact-of-Parental-Multiple
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

If you're a regular listener, you've heard me say that the things that people affected by MS want the most -- access to quality healthcare, affordable prescription medications, and funding for MS research -- are, to a large extent, functions of public policy. The people who decide whether we get these things are our elected officials at both the state and federal level. That's why advocacy should be a high priority for everyone affected by MS.
Make no mistake. MS advocacy delivers real results. Joining me in exploring how advocacy drives changes that improve the lives of people living with MS, and why you may want to consider becoming an MS activist, are Holly Pendell, the National MS Society's Associate Vice-President of Advocacy and MS activist Angel Hardy Heinz.

Ready to learn more about MS advocacy? You can take the next step from the comfort of your own home. We're sharing the details of next week's virtual MS Activist Rally. 
We'll tell you about a study that found a Mediterranean Diet could have a positive impact on cognition among people living with MS
You'll learn about a clinical trial that's currently underway to determine whether aerobic exercise can promote myelin repair.
We're sharing the details about an upcoming International Progressive MS Alliance webcast that's focused on developing treatments for progressive MS.
And we'll tell you how high school seniors or college graduates who are affected by MS can apply for an Oscar the MS Monkey academic scholarship.
We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: We're all about MS advocacy  :22
The virtual MS Activist Rally takes place March 28. Are you registered???  5:22
STUDY RESULTS: Mediterranean Diet Is associated with cognition in MS   8:01
A clinical trial is underway to determine whether aerobic exercise can promote myelin repair  9:43
The International Progressive MS Alliance is hosting a webcast focused on developing treatments for progressive MS  11:01
Oscar the MS Monkey is accepting academic scholarship applications from high school seniors and college graduates who are affected by MS  11:57
Holly Pendell, the National MS Society's Associate Vice-President of Advocacy and MS activist Angel Hardy Heinz discuss how advocacy makes a real difference in the lives of people affected by MS, and how you can get involved    13:49
Share this episode  27:12
Have you downloaded the free RealTalk MS app?  27:32

SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/290
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 MS Activist Rally registration
https://p2a.co/Rally2023
STUDY:  Mediterranean Diet is Associated with Cognition in Multiple Sclerosis
https://aan.com/MSA/Public/Events/AbstractDetails/52954
Webcast: Developing Treatments to End MS Progression registration
https://msif.org/progressiveMSwebcast
Oscar the MS Monkey Academic Scholarship Application
http://mroscarmonkey.org/site/Scholarship%20Application%202023.pdf
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 Rea

For many people, one of the most challenging aspects of living with MS is living with uncertainty. Living with unanswerable questions like, "Is today the day I experience a relapse?" "Will my disability worsen?" "Will I be able to continue working?" "Will I be able to take care of my family?"   
These are all very real questions, and while there may not be answers for them today, there are steps you can take and strategies you can adopt to ensure that you're managing and minimizing the uncertainty of living with MS.

Joining me to talk about her journey as a mom living with MS and to share how she's learned to cope with the uncertainty of MS is MS advocate Sarah Wolfe. Also joining our conversation with specific strategies for living your best life despite the uncertainties of MS is Dr. Laura Hancock, a neuropsychologist at the University of Wisconsin School of Medicine and Public Health.
It's a big topic, and I'm devoting this entire MS Awareness Week episode of RealTalk MS to my conversation with Sarah Wolfe and Dr. Laura Hancock.
We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: It's MS Awareness Week and we're talking about living with the uncertainty of MS  :22
MS advocate Sarah Wolfe and Neuropsychologist Dr. Laura Hancock discuss the many different facets of successfully living with the uncertainty of MS    3:38
Share this episode  39:55
Have you downloaded the free RealTalk MS app?  40:15

SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/289
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
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 289
Guests: Sarah Wolfe and Dr. Laura Hancock
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy

When you visit the Oceans of Hope U.K. website, it reads, "Oceans of Hope is for people with MS, led by people with MS." It goes on to say, "Our aim is to offer people from all over the world the opportunity to experience sailing as a way of learning new skills and restoring the self-confidence which can be stolen by MS."

The folks at Oceans of Hope U.K. can make that claim with high confidence. My guest today is the founder of Oceans of Hope U.K., Robert Munns, who lives with MS himself. Robert had what he describes as a life-changing experience while serving as a member of the crew on what turned out to be an unforgettable sailing adventure. Robert's story is one you won't want to miss.
Today, Oceans of Hope U.K. offers anyone living with MS the opportunity to experience that same personal transformation that Robert experienced.
When you review your MRI scans with your neurologist, the focus is on those white matter lesions that characterize MS. However, study results announced at the 2023 ACTRIMS Forum show that white matter lesions are not the cause of severe MS disability. We're breaking down this game-changing research. 
And speaking of game changers, we're sharing the details of a small, portable MRI device that can effectively image MS lesions. 
We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: News from the 2023 ACTRIMS Forum and a story that I hope you find as compelling as I did  :22
Study results show that white matter lesions are not the cause of severe MS disability 2:22
A portable less invasive MRI device capable of imaging MS lesions  6:33
Meet Robert Munns, the founder of Oceans of Hope UK    9:25
Share this episode  37:20
Have you downloaded the free RealTalk MS app?  37:41

SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/288
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
Oceans of Hope U.K.
https://oceansofhope.co.uk
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 288
Guest: Robert Munns
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy

Last week in San Diego, the Americas Committee for Treatment and Research in Multiple Sclerosis convened their annual meeting, the ACTRIMS Forum. One of the highlights of this meeting is the presentation of the Barancik Prize, awarded in recognition of exceptional innovation in MS research.

This year's winner of the Barancik Prize is Dr. Ruth Ann Marrie, a clinician scientist at the University of Manitoba. The Barancik Prize is administered by the National MS Society, and this year's award recognizes Dr. Marrie's landmark discoveries that deepen our understanding of how and when MS evolves. 
During the ACTRIMS Forum, Dr. Marrie joined me to discuss her groundbreaking research and the impact it's had on MS care.

If you're a regular listener, you've probably heard me say that the things that people affected by MS want most -- access to quality healthcare, affordable prescription medications, and funding for MS research are, to a large extent, all functions of public policy. The people who decide whether we get these things are our elected officials at the state and federal level.  That's why advocacy is a high priority for people affected by MS.
The National MS Society's Public Policy Conference takes place next week, March 6-8, in Washington, D.C. Joining me to discuss how advocacy makes a real difference in influencing pending legislation, while giving us a preview of what we can expect to see and hear at this year's conference, is the National MS Society's Executive Vice-President for Advocacy and Healthcare Access, Bari Talente.
We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: We're back from the ACTRIMS Forum and a conversation with this year's winner of the Barancik Prize for innovation in MS research  :22
Dr. Ruth Ann Marrie discusses some of her groundbreaking research and its impact on MS care  1:57
We are one week away from the National MS Society's Public Policy Conference in Washington, D.C.  17:18
Bari Talente, the National MS Society's Executive Vice-President of Advocacy and Healthcare Access, discusses the importance of advocacy, while sharing a preview of the legislative issues that MS activists will be advocating for next week on Capitol Hill    18:18
Share this episode  32:25
Have you downloaded the free RealTalk MS app?  32:45

SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/287
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
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 287
Guests: Dr. Ruth Ann Marrie and Bari Talente
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy

Two years ago, the National MS Society made a public commitment to do more to ensure that the MS movement was open to and reflective of everyone affected by MS.
When you stop to consider issues like access to healthcare or MS clinical research, it quickly becomes apparent that diversity, equity, and inclusion aren't only organizational goals for the MS Society. They also address some of the systemic barriers that directly impact the quality of MS care for members of historically marginalized communities who are living with MS. 
Joining me in exploring how the MS Society is embedding the principles of diversity, equity, and inclusion into every aspect of the MS movement is the National MS Society's Vice-President of Diversity, Equity, and Inclusion, Neisha Fredericks.

We're also sharing the details of research conducted at the University of Virginia that identified a specific contributor to the autoimmune response and neuroinflammation that characterize MS.
And we'll give you an up-close and personal illustration of how artificial intelligence (AI) will impact MS research and treatment.
We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: Embedding diversity, equity, and inclusion into the MS movement  :22
Researchers identify a neuroinflammation "regulator" lurking in the gut microbiome  1:28
Artificial intelligence will have an impact on virtually every aspect of MS research and care  4:45
Neisha Fredericks, the National MS Society's Vice-President of Diversity, Equity, and Inclusion, discusses the work that's taken place and the work still to be done to ensure that the MS movement is open to and reflective of everyone affected by MS    9:38
Share this episode  32:13
Have you downloaded the free RealTalk MS app?  32:34

SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/286
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
STUDY:  The Activity of the Aryl Hydrocarbon Receptor in T Cells Tunes the Gut Microenvironment to Sustain Autoimmunity and Neuroinflammation
https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.3002000
ChatGPT
https://openai.com/blog/chatgpt
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 286
Guest: Neisha Fredericks
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy