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 book and some of the issues affecting people with MS that Lydia Emily is passionate about.

We'll also tell you about study results that provide an answer to how nerve cells die in MS.

We'll share results from a study that shows MS progression may not be directly connected to the number of lesions someone may have.

And we'll tell you about research that provides evidence for continuing your MS disease-modifying therapy, no matter your age.

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

This Week: The Art of Hope :22

A study uses a novel mouse model to explain how nerve cells die in MS 2:17

Study results show that MS progression may have less to do with the number of lesions and more to do with what's happening inside those lesions 5:23

Study results provide evidence for continuing your DMT, even as you age 9:15

Artist Lydia Emily and co-author Lenlee Keep discuss The Art of Hope: The Life and Art of Lydia Emily 14:17

Share this episode 34:50

Have you downloaded the free RealTalk MS app? 35:11

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Just copy this link & paste it into your text or email: https://realtalkms.com/377

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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

STUDY: Remyelination Protects Neurons from DLK-Mediated Neurodegeneration https://www.nature.com/articles/s41467-024-53429-5

STUDY: Advanced MRI Measures of Myelin and Axon Volume Identify Repair in Multiple Sclerosis https://onlinelibrary.wiley.com/doi/10.1002/ana.27102

STUDY: Impact of Discontinuing Disease-Modifying Therapies On Healthcare Utilization Among Midlife Patients with Multiple Sclerosis in the United States https://www.jmcp.org/doi/10.18553/jmcp.2024.30.11.1248

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RealTalk MS Episode 377 Guests: Lydia Emily and Lenlee Keep

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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.

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Just copy this link & paste it into your text or email: https://realtalkms.com/V201

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

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 V201 Guests: Dr. Riley Bove

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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 integrating dance and movement therapy, music therapy, and art therapy into your treatment plan to help manage your MS symptoms and enhance your well-being.

November is National Family Caregivers Month, and we're sharing a neat piece of tech that can not only make life easier for MS caregivers but can make life better for their care recipients, as well. CEO Costin Tuculescu introduces us to his company's new device, OnScreen.

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

This Week: Adding expressive therapies to your MS treatment plan :22

OnScreen CEO Costin Tuculescu explains how OnScreen can help people with MS and their caregivers 1:34

Dr. Francoi Bethoux discusses the benefits of dance therapy, music therapy, and art therapy for people living with MS 17:45

Share this episode 31:47

Have you downloaded the free RealTalk MS app? 32:06

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Just copy this link & paste it into your text or email: https://realtalkms.com/376

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

OnScreen https://onscreeninc.com

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

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RealTalk MS Episode 376 Guests: Costin Tuculescu and Dr. Francois Bethoux

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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 families can help manage MS is Dr. Ann Yeh. Dr. Yeh is a Professor of Pediatric Neurology at the University of Toronto and the director of the MS and Neuroinflammatory Disorders Program and Fellowship Program at the University of Toronto's Hospital for Sick Children, known as SickKids.

We'll also tell you about a new online resource for MS care partners.

We'll share the results of a study that explored how different symptom management responsibilities impact MS care partners.

We'll share details of a study that demonstrated positive results in improving MS-related fatigue.

We'll tell you about the discovery of a plant-based molecule that is showing promise in promoting myelin repair.

And we're sharing surprising research results that have more than doubled the prevalence of MS in Australia.

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

This Week: Managing Teenage MS :22

November is National Family Caregivers Month 1:47

You're invited to preview MS Care Partner Connection 3:40

A study reveals the most challenging MS symptoms for care partners to manage 6:33

Study results show Modafinil and cognitive behavioral therapy are both effective in managing MS fatigue 7:25

Researchers discover a plant-based molecule that may be effective in promoting myelin repair 9:46

Prevalence of MS in Australia more than doubled over an 11-year period 12:54

Dr. Ann Yeh discusses the challenges of MS among adolescents 16:05

Share this episode 31:15

Have you downloaded the free RealTalk MS app? 31:36

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/375

ADD YOUR VOICE TO THE CONVERSATION

I've always considered the RealTalk MS podcast a conversation. 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 MS Care Partner Connection https://mscarepartnerconnection.com

Addressing the Needs of Multiple Sclerosis Caregivers from Diagnosis Onward: The Development of a Comprehensive Online Caregiver Protocol https://meridian.allenpress.com/ijmsc/article/25/6/273/496788/Addressing-the-Needs-of-Multiple-Sclerosis

STUDY: Symptom Management Among Multiple Sclerosis Care Partners in Canada https://meridian.allenpress.com/ijmsc/article/25/6/281/496792/Symptom-Management-Among-Multiple-Sclerosis-Care

STUDY: Comparative Effectiveness of Cognitive Behavioural Therapy, Modafinil, and Their Combination for Treating Fatigue in Multiple Sclerosis (COMBO-MS): A Randomised, Statistician-Blinded, Parallel-Arm Trial https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00354-5/abstract

STUDY: Distinct Chemical Structures Inhibit the CEMIP Hyaluronidase and Promote Oligodendrocyte Progenitor Cell Maturationhttps://www.jbc.org/article/S0021-9258(24)02418-9/fulltext

STUDY: Significantly Increasing Multiple Sclerosis Prevalence in Australia from 2010 to 2021 https://journals.sagepub.com/doi/10.1177/13524585241265890

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RealTalk MS Episode 375 Guest: Dr. Ann Yeh

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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 grieving when you live with MS.

We'll also share the results of a study that show other health conditions can have a negative impact on MS disease activity, like relapses and disability worsening.

And we're sharing the details of the $4.6 million dollar investment the National MS Society is making in research focused on myelin repair.

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

This Week: Grieving when you're living with MS :22

A study shows how other health conditions may cause MS to worsen 2:00

The National MS Society is investing $4.6 million dollars in research focused on myelin repair 6:21

Dr. Holly Hendin helps us understand the importance of healthy grieving when you're living with MS 9:39

Share this episode 35:30

Have you downloaded the free RealTalk MS app? 35:50

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Just copy this link & paste it into your text or email: https://realtalkms.com/374

ADD YOUR VOICE TO THE CONVERSATION

I've always considered the RealTalk MS podcast a conversation. 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

STUDY: Comorbidity and Disease Activity in Multiple Sclerosis https://jamanetwork.com/journals/jamaneurology/fullarticle/2823966

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

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RealTalk MS Episode 374 Guest: Dr. Holly Hendin

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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 2024 :22

Dr. Bruce Bebo shares the key research presented at ECTRIMS 1:06

Share this episode 26:13

Have you downloaded the free RealTalk MS app? 26:31

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/373

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

RealTalk MS Episode 369: ECTRIMS 2024 with Kristine Werner Ozug and Dr. Bruce Bebo https://realtalkms.com/369

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 373 Guest: Dr. Bruce Bebo

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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 that's editing human DNA to promote myelin repair.

We'll share the results of a study that offers some surprising evidence about the quality of MS care for women in France.

We'll explain why a study that shows people with MS are at a higher risk for being diagnosed with cancer may not be as scary as it sounds.

In my conversation with Dawn Schottlandt, you'll hear the story of In My Running Shoes and learn how people with MS and other disabilities can benefit from their work.

And we'll give you all the details about artist Elizabeth Jameson's exhibition, An Intimate Journey, which opens in New York on Saturday, October 19th.

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

This Week: Open Enrollment has begun :22

Researchers succeed in editing human DNA to promote myelin repair 1:14

Research reveals women with MS are often undertreated in France 3:38

Are people with MS more likely to develop cancer? 6:18

Dawn Schottlandt explains why she founded In My Running Shoes and how you might benefit 9:12

Elizabeth Jameson's art exhibition, An Intimate Journey, opens in New York on Saturday 16:01

Sarah Anderson explains the changes to Medicare in 2025 18:04

Share this episode 27:56

Have you downloaded the free RealTalk MS app? 28:16

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/372

ADD YOUR VOICE TO THE CONVERSATION

I've always considered the RealTalk MS podcast a conversation. 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

STUDY: CRISPR-Edited ES-Derived Oligodendrocyte Progenitor Cells Improve Remyelination in Rodents https://www.nature.com/articles/s41467-024-52444-w

STUDY: Cancer Risk Among Patients with Multiple Sclerosis https://www.neurology.org/doi/10.1212/WNL.0000000000209885

In My Running Shoes https://inmyrunninigshoes.org

Elizabeth Jameson exhibition at the Positive Exposure Gallery https://positiveexposure.org/event/41014

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 372 Guests: Dawn Schottlandt and Sarah Anderson

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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 details, including how you can register for this free virtual event.

And I'm sharing my thoughts following attending the University of Pittsburgh's bi-annual caregiver research conference.

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

The Hispanic/Latinx MS Experience Summit is two days away! :22

Don't miss our ECTRIMS Extra Conversations 1:38

Thoughts following attending the caregiver research conference at the University of Pittsburgh 2:15

Dee and BE discuss all things Alinker (including how you can get yours!) 9:26

Share this episode 37:02

Have you downloaded the free RealTalk MS app? 37:23

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/371

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

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

MS Care Partner Connection https://mscarepartnerconnection.com

The Alinker https://thealinker.com

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

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RealTalk MS Episode 371 Guests: Dee Ecklund and BE Alink

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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 clinical trial for Tolebrutinib and relapsing-remitting MS.

At ECTRIMS, Dr. Oh shared the outcome of the Gemini clinical trial.

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

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims244

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

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 ECTRIMS Extra Guest: Dr. Jiwon Oh

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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 Episode 125 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 Episodes 297and 298 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, Dr. Bruce Bebo, and the MS Society's Vice-President of Global Initiatives, Shawna Golden, to bring us up to date on how this global MS research initiative has been refined and enhanced and how it's resetting the global MS research agenda.

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

This Week: The Pathways to Cures research roadmap has been updated :22

Dr. Bruce Bebo and Shawna Golden discuss the refined and enhanced Pathways to Cures research roadmap 2:34

Share this episode 29:58

Have you downloaded the free RealTalk MS app? 30:18

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/370

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

RealTalk MS Episode 125: From the Pathways to Cures Think Tank https://realtalkms.com/125

RealTalk MS Episode 297: From the Pathways to Cures Global Summit (Part 1) https://realtalkms.com/297

RealTalk MS Episode 298: From the Pathways to Cures Global Summit (Part 2) https://realtalkms.com/298

Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms

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RealTalk MS Episode 370 Guests: Dr. Bruce Bebo, Shawna Golden

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