RealTalk MS

It's hard to talk to anyone about anything without talking about the coronavirus. And because the CDC has announced that people with weakened immune systems may be particularly vulnerable to this virus, people affected by MS can feel as though they have even more reason to worry.

My guest is clinical psychologist Dr. Abbey Hughes and we're talking about how people affected by MS should be thinking about the coronavirus, and what they should and shouldn't be doing about it.

You'll also hear about a newly approved MS disease-modifying therapy and another MS disease-modifying therapy that's just been submitted for approval.

We'll tell you how the Affordable Care Act wound its way to the Supreme Court, and we'll look at what's at stake for people affected by MS or any other chronic illness.

We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Look For the MS Awareness Week Bonus Episode on Thursday :21

I'm Back from the National MS Society Public Policy Conference :45

I Think I Might Owe You an Explanation 2:09

Canada Approves Mayzent for Treating Active Secondary Progressive MS 5:58

Janssen Submits Application to EMA for Approval of Ponesimod 6:36

How the Affordable Care Act Wound Up in the U.S. Supreme Court 7:40

My Interview with Dr. Abbey Hughes 12:36

The Things You Need to Know About the Coronavirus 30:22

Share this Episode 33:07

Reminder...Please Donate to Walk-MS 33:29

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Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: [email protected]Phone: (310) 526-2283

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What You Need to Know About Coronavirus (COVID-19)

Jon's WALK-MS Fundraising Page

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RealTalk MS Episode 132 Hosted By: Jon Strum Guests: Dr. Abbey Hughes

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Coronavirus, COVID-19, RealTalkMS

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My guest is Dr. Jackie Bhattarai and we're talking about her research exploring the disparities in MS-related depression and fatigue symptoms between African-Americans living with MS and Caucasians living with MS. We're also talking about positive clinical trial results for a drug that slows disability progression in people living with primary progressive MS and non-active secondary progressive MS. And we'll tell you about the new MS drug from Novartis that's awaiting FDA and EMA approval. You'll learn about a study that shows how high doses of Vitamin D increased inflammation and worsened disability in mice that had the "mouse version" of MS. And you'll hear about the insurance company in Utah that's saving money by flying people to Mexico to purchase their prescription medications (and they're even throwing in a $500 cash bonus for every trip you make!). We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Greetings from the MS Society's Public Policy Conference :21

Where I'll Be This Month 1:02

Positive Clinical Trial Results Posted for Masitinib 4:18

Novartis Applies for FDA & EMA Approval for Ofatumumab 6:07

High Dosage of Vitamin D Worsens MS Disability in Mice 7:15

Insurer Saves Money by Flying People to Mexico for Their Prescription Medications 10:15

My Interview with Dr. Jackie Bhattarai 13:58

Share This Episode 25:57

Reminder...Please Donate to Walk MS 26:19

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Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: [email protected]Phone: (310) 526-2283

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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

Positive Top-Line Phase 2B/3 Results for Masitinib in Progressive Forms of MS

High Dose Vitamin D Worsens Experimental CNS Autoimmune Disease By Raising T Cell-Excitatory Calcium

Jon's WALK MS Fundraising Page

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RealTalk MS Episode 131 Hosted By: Jon Strum Guests: Dr. Jackie Bhattarai

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, MSPPC20, RealTalkMS

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Welcome to this Bonus Episode of RealTalk MS, coming to you from the 2020 ACTRIMS Forum. ACTRIMS is an acronym for the Americas Committee for Treatment and Research in Multiple Sclerosis. And this year, 1200 MS research scientists and clinicians have come together to share the latest MS research news and insights. We'll take you inside the proceedings at ACTRIMS and share the highlights of some of the most compelling presentations. My first guest is the recipient of this year's Barancik Prize, Professor Francisco Quintana, and we're talking about Professor Quintana's innovative breakthrough research. And my second guest, Clinical Specialist Micki Maes, will break down the details of a cutting edge application that uses artificial intelligence to read and analyze MRI scans. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ ACTRIMS 2020 Review :18

My Interview with Professor Francisco Quintana 9:52

My Interview with Clinical Specialist Micki Maes 16:24

Share This Episode 22:08

Reminder...Please Donate to Walk MS 22:37

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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

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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

Jon's WALK MS Fundraising Page

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RealTalk MS Bonus Episode: ACTRIMS 2020 Hosted By: Jon Strum Guests: Professor Francisco Quintana, Micki Maes

Tags: MS, MultipleSclerosis, MSResearch, ACTRIMS, MSSociety, RealTalkMS

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We're just a week away from the National MS Society's Public Policy Conference in Washington, D.C. And my guest is Diane Kramer, an MS Activist from State College, Pennsylvania, who will be attending the Public Policy Conference for the first time. Diane has experienced some of the same obstacles and frustrations that so many people living with MS experience -- insurance companies preventing her from getting the disease-modifying therapy that her neurologist prescribed, having the high cost of her MS medication force her to make nearly impossible financial choices, even skipping treatment. But whether she's knocking on the doors of neurologists' offices in her area so that she can connect them with resources from the MS Society, or starting an MS support group in her community when she found there wasn't one, Diane is a force to be reckoned with. Jon also has some difficult news to share. And we'll tell you how you can support Jon in this year's Walk MS. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Greetings from the ACTRIMS Forum :22

Some Difficult News :58

You Can Support Jon in WALK MS 2:36

My Interview with Diane Kramer 3:58

Share This Episode 26:37

Reminder...Please Donate to Walk MS 27:02

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Just copy this link & paste it into your text or email: https://realtalkms.com/130

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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

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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

Jon's WALK MS Fundraising Page

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RealTalk MS Episode 130 Hosted By: Jon Strum Guests: Diane Kramer

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, MSPPC20, RealTalkMS

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In just two weeks, the National MS Society is hosting its annual Public Policy Conference in Washington, D.C. The centerpiece of that conference is our Day On The Hill when 300 MS Activists meet with our Congressional Representatives and Senators to discuss the legislative issues that are most important to people affected by MS. My guest is Bari Talente, the Executive Vice President of Advocacy for the National MS Society and we're talking all about this year's Public Policy Conference and the value and importance of advocacy. We'll also let you know how and where to sign up for Discovering Life-Changing Treatments for Progressive MS, the global webcast from the International Progressive MS Alliance. (You have to hurry! It's happening in 2 days!) You'll hear about an encouraging study of the effectiveness of stem cell therapy for some people living with secondary progressive MS. We're also talking about why you might want to support Jon in this year's Walk MS. And you'll learn about a non-invasive breakthrough technology that provides a detailed assessment of the status of MS progression and the effectiveness of disease-modifying therapy...in 10 seconds. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Sharing Some Crazy Statistics :44

We're Just 2 Weeks Away From the Public Policy Conference 2:27

Register for the Global Webcast: Discovering Life-Changing Treatments for Progressive MS 3:39

You Can Support Jon in WALK MS 4:54

HSCT Shows Benefits in Some People with Secondary Progressive MS 6:23

New Eye-Tracking Tech Uses AI to Monitor MS 9:09

My Interview with Bari Talente 11:54

Share This Episode 26:03

Reminder...Please Donate to Walk MS 26:28

Download the RealTalk MS App 27:03

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Just copy this link & paste it into your text or email: https://realtalkms.com/129

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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

___________

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

Jon's WALK MS Fundraising Page

Register for the International Progressive MS Alliance Global Webcast: Discovering Life-Changing Treatments for Progressive MS

Low-Intensity Lympho-Ablative Regimen Followed by Autologous Hematopoietic Stem Cell Transplantation in Severe Forms of Multiple Sclerosis: A MRI-Based Clinical Study

BEAT-MS Clinical Trial

C. Light Technologies

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RealTalk MS Episode 129 Hosted By: Jon Strum Guests: Bari Talente

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, RealTalkMS

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My guest is Dr. Riley Bove, and we're talking about some of the things you might want to consider when you're thinking about getting pregnant, some important things to consider when you are pregnant, some things to discuss when you and your doctor are planning your delivery, and things to be aware of following your pregnancy. We're also talking about the results of two different studies that underscore the important relationship between the gut and MS. We'll give you a few different opportunities to participate in MS research, and we'll remind you about why your participation is important. And we'll share the sobering results of a large study that serves to remind everyone why diagnosing and treating depression among people living with MS should be a priority. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Changes to Medicaid Could Impact Families Affected by MS 1:11

Study Shows Positive Effects of Probiotics in MS 5:04

Study Shows Reducing This Amino Acid in Your Diet Could Delay Onset & Progression of MS 7:17

Opportunities for You to Participate in MS Research 10:48

Study Shows People Living with MS at Higher Risk of Death by Suicide 14:13

My Interview with Dr. Riley Bove 17:26

Share This Episode 29:31

Download the RealTalk MS App 30:02

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Just copy this link & paste it into your text or email: https://realtalkms.com/128

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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

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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

Jon's WALK MS Fundraising Page

EMD Serono & MyHealthTeams Family Planning Resource Center

STUDY: Immunomodulatory and Anti-Inflammatory Effects of Probiotics in Multiple Sclerosis: A Systematic Review

STUDY: Methionine Metabolism Shapes T Helper Cell Responses Through Regulation of Epigenetic Reprogramming

Participate in Research: Health Behaviors in Adults with MS Who Use Wheelchairs - Contact Stephanie Silveira, [email protected] or (205) 975-1306

Participate in Research: Health Beliefs & Physical Activity

Participate in Research: The iConquer MS Patient-Powered Research Database

STUDY: Association Between Neurological Disorders and Death by Suicide in Denmark

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RealTalk MS Episode 128 Hosted By: Jon Strum Guests: Dr. Riley Bove

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Medicaid, RealTalkMS

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This past year, a bill was introduced in the California State Assembly that would create more transparency among pharmaceutical companies and make more lower-cost generic drugs available to Californians by making it easier for the California Attorney General to prosecute pharmaceutical companies for so-called "pay for delay" deals. MS Activists in California talked to our state legislators, asking them to support this bill, known as AB 824, and on January 1st, California Governor Gavin Newsom signed AB 824 into law. My guest is the author of AB 824, California Assemblymember Jim Wood. We're talking with Assemblymember Wood about what it was like to guide a bill that the pharmaceutical industry came out against through the state legislature and see it signed into law. We'll share results of a new study that shows that undiagnosed and under-diagnosed depression is a serious problem that negatively impacts the quality of life among many older adults living with MS. We'll tell you about a U.S. Circuit Court of Appeals ruling that leaves the fate of the Affordable Care Act in the hands of the U.S. Supreme Court -- and what that means for people living with MS. And we'll tell you about Dr. Francisco Quintana, this year's recipient of the Barancik Prize for exceptional innovation and originality in MS research. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Where I'm Going to Be This Month :22

Can You Help Me Out? 2:14

Barancik Prize Awarded to Dr. Francisco Quintana 5:25

Untreated Depression Negatively Impacts Older Adults Living with MS 7:21

Judge Hands FDA a Loss on Stem Cell Clinics 10:59

Appeals Court Won't Review Affordable Care Act Decision 13:17

My Interview with California Assemblymember Jim Wood 17:20

Share This Episode 27:01

Download the RealTalk MS App 27:27

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Just copy this link & paste it into your text or email: https://realtalkms.com/127

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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

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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

Jon's WALK MS Fundraising Page

STUDY: Under-Treated Depression Negatively Impacts Lifestyle Behaviors, Participation, and Health-Related Quality of Life Among Older People with Multiple Sclerosis

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RealTalk MS Episode 127 Hosted By: Jon Strum Guests: California Assemblymember Jim Wood

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, RealTalkMS

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Multiple studies show that early and ongoing treatment with disease-modifying therapy is the most effective way to slow MS progression, modify the course of the disease, and maintain optimal brain health. Yet, for many people living with MS, these life-changing treatments remain out of reach. The National MS Society has released the results of a new survey that demonstrates that this problem may be much larger and more serious than you may have imagined. My guests are Tim Coetzee, the Chief Advocacy, Research, and Services Officer, and Bari Talente, the Executive Vice President of Advocacy for the National MS Society, and we're talking about the barriers to accessing MS medications and what can be done to bring those barriers down. We're also talking about the U.S. Supreme Court's decision to reject a petition filed by 20 state attorneys general, the U.S. House of Representatives, and supported by the National MS Society and 23 other patient organizations, to issue an expedited ruling on the constitutionality of the Affordable Care Act. We'll tell you about a study that shows that mothers of children living with MS are experiencing significant levels of anxiety and mood disorders. We'll share some good news for people in Europe living with secondary progressive MS. We'll tell you where you can catch the replay of last week's International Progressive MS Alliance Managing Symptoms & Enhancing Well-Being in Progressive MS Facebook Live event. And we'll tell you how a group of insurance companies is banding together to lower the price of generic prescription medications. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Catch the Replay of the International Progressive MS Alliance Managing Symptoms & Enhancing Well-Being in Progressive MS Facebook Live Event 1:01

MS Society Joins Patient Organizations Commenting on Supreme Court Passing on ACA Ruling 2:04

New Study Signals Need for Attention to Mental Health Care in Mothers of Children with MS 5:56

Mayzent Approved for Secondary Progressive MS in Europe 8:04

Insurance Companies Unite to Make Cheaper Generics 8:49

My Interview with Tim Coetzee and Bari Talente 11:14

Share This Episode 21:31

Download the RealTalk MS App 21:57

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SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/126

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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

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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

New Survey Shows 40% of People with MS Alter or Stop Taking Medications Due to High Cost

National MS Society: Make MS Medications Accessible

REPLAY: Symptom Management & Well-Being in Progressive MS Facebook Live Event

Patient Groups Disappointed by Ongoing Uncertainty in Wake of Supreme Court's Decision Not to Expedite Health Care Case

STUDY: Increased Mental Health Care Use by Mothers of Children with Multiple Sclerosis

Kids Get MS Too: A Guide for Parents of a Child or Teen with MS

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RealTalk MS Episode 126 Hosted By: Jon Strum Guests: Tim Coetzee and Bari Talente

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, PediatricMS, Mayzent, RealTalkMS

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Last week, the National MS Society convened the Pathways to Cures Think Tank. I think that we'll look back at this meeting as a historic moment when a flag was planted and intentions were declared. We've taken the first steps toward creating a global consensus for defining specific pathways to stop MS progression, restore lost function, and end MS. The Pathways to Cures Think Tank was an extraordinary event, and we're devoting this entire episode of RealTalk MS to hearing from some of the participants and sharing the highlights of the meeting. This is the episode of RealTalk MS that you don't want to miss. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ We're at the Pathways to Cures Think Tank :18

My Interview with Dr. Carol Whitacre 1:46

My Interview with Dr. Bruce Bebo 8:44

Why there's an "s" at the end of "Cure" 15:50

My Interview with Dr. Kassandra Munger 16:32

My Interview with Dr. Philip De Jager 25:48

My Thoughts on the Pathways to Cures Think Tank 35:34

Share This Episode 36:48

Download the RealTalk MS App 37:18

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Just copy this link & paste it into your text or email: https://realtalkms.com/125

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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

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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

Register for the Symptom Management & Well-Being in Progressive MS: Advancing Research and Treatment Facebook Live Event

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RealTalk MS Episode 125 Hosted By: Jon Strum Guests: Dr. Carol Whitacre, Dr. Bruce Bebo, Dr. Kassandra Munger, Dr. Philip De Jager

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, PathwaysToCures, RealTalkMS

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We're exploring the healing power of adventure. My guest is Brad Ludden, the founder of First Descents, a non-profit organization that, since 2001, has taken over 10,000 young adult oncology patients on more than 1,000 outdoor adventures that feature activities like rock-climbing, kayaking, and surfing. Last year, First Descents expanded their programming to include outdoor adventures designed for young adults living with MS. And every one of these adventures is offered at no cost to the participants.

We're also talking about the International Progressive MS Alliance's upcoming Facebook Live event, Symptom Management & Well-Being in Progressive MS: Advancing Research and Treatment. It takes place next week, and we'll tell you how you can register to be a part of it.

We're talking about a research team at the Mayo Clinic that discovered a molecule that serves as a "switch" for myelin repair.

You'll hear about a study that's going to compare the effectiveness of stem cell treatment with high-efficacy disease-modifying therapies for treating relapsing MS. And we'll tell you how you can register as a potential participant.

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

___________ Greetings from the Pathways to Cures Think Tank :22

My Shout-Out to the MS Society Southern California-Nevada Chapter's Emerging Leadership Board 1:14

Register for the International Progressive MS Alliance's FACEBOOK LIVE Event 3:14

California Is Launching Its Own Generic Prescription Drug Label 4:49

EMD Serono's MS-LINK & MyHealthTeams Launch a Family Planning Resource Center 7:48

BEAT-MS Study Will Compare Stem Cell Treatment with High-Efficacy Disease-Modifying Therapies 9:08

Mayo Clinic Team Discovers a Molecular Switch for Repairing Myelin 11:14

My Interview with Brad Ludden 12:50

Share This Episode 27:24

Download the RealTalk MS App 27:50

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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

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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

First Descents

Register for the Symptom Management & Well-Being in Progressive MS: Advancing Research and Treatment Facebook Live Event

EMD Serono & MyHealth Teams Family Planning Resource Center

BEAT-MS Clinical Trial

Blocking the Thrombin Receptor Promotes Repair of Demyelinated Lesions in the Adult Brain

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RealTalk MS Episode 124 Hosted By: Jon Strum Guests: Brad Ludden

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, FirstDescents, MyMSTeam, MayoClinic, RealTalkMS

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