RealTalk MS

Past Podcast Episodes

Episode 449: Putting People Affected by MS at the Center of MS Research with Sara Loud, Stephanie Buxhoeveden, and Hollie Schmidt


When you join the iConquer MS community, you're no longer just a patient; you become a research partner. Not just a data point in someone's study. You become the person to suggest the study, to help define the study, and to participate in sharing the outcome of the study.

I Conquer MS

In this week's episode, I talk with the iConquer MS leadership team about what it means to be part of this people-powered research revolution and how iConquer MS keeps people affected by MS at the center of MS research.

The National Institutes of Health has just published a Strategic Plan for Disability Health Research. We're sharing all the details.

And a research team analyzed data from 20 global studies to determine whether anti-CD20 disease-modifying therapies (Ocrevus, Kesimpta, Briumvi) were cost-effective. We're sharing their somewhat surprising results.

And a research team analyzed data from 20 global studies to determine whether anti-CD20 disease-modifying therapies (Ocrevus, Kesimpta, Briumvi) were cost-effective. We're sharing their somewhat surprising results.

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

This Week: We're talking about people-powered MS research  :22

The NIH has published a Strategic Plan for Disability Health Research  1:15

Researchers determine whether anti-CD20 disease-modifying therapies (Ocrevus, Kesimpta, Briumvi) are cost-effective  6:05

Sara Loud, Stephanie Buxhoeveden, and Hollie Schmidt discuss what it means to put people affected by MS at the center of MS research  12:41

Share this episode  36:26

Next week  36:45

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/449

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 at www.RealTalkMS.com

iConquer MS
https://iconquerms.org

National Institutes of Health Strategic Plan for Disability Health Research
https://dpcpsi.nih.gov/disabilityhealthresearch

STUDY: Economic Value of Anti-CD20 Therapies in Multiple Sclerosis: A Systematic Review of Cost-Effectiveness Studies
https://journals.sagepub.com/doi/10.1177/17562864261426816

AbleNOW
https://ablenow.com

JOIN: The RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms

REVIEW: Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 449
Guests: Sara Loud, Stephanie Buxoeveden, and Hollie Schmidt

Episode 448: At the National MS Society’s Public Policy Conference with David, Cliff, and Michelle


Last week, about 170 MS activists from across the country gathered in Washington, D.C. to participate in the National MS Society's Public Policy Conference. It's hard to come away from this event and not feel outraged by the stories that are shared, but also inspired by the resilience and bravery of the MS Activists who are willing to share some of the worst moments in their MS journey to make sure that our elected representatives in the House and Senate understand why the legislation we ask them to support is so vitally important.

U.S. Capitol

I met so many truly amazing MS activists at this year's Public Policy Conference, and you'll meet some of them in this week's episode.

We're also sharing survey results that paint a disturbing picture of the human consequences that resulted from losing Congressional funding to support enhanced premium tax credits for ACA Marketplace Enrollees

The National MS Society has invested $2.3 million in 11 research projects focused on women's health issues and MS. We're sharing details of each new research initiative being funded.

You'll learn about a clinical trial for a novel investigational therapy for MS and other autoimmune diseases.

And we'll tell you about a study that you can participate in from home…and get compensated for your participation!

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

This Week: We're at the Public Policy Conference  :22

Survey results show the human consequences of losing Congressional funding to support enhanced premium tax credits for ACA Marketplace Enrollees  4:45

The National MS Society invests $2.3 million dollars in research projects focused on women's health issues and MS  7:23

The first healthy participant is dosed in the clinical trial for ICP-538  11:24 

An opportunity to participate from home in a clinical trial (and there's compensation!)  12:41

MS Activists David, Cliff, and Michelle share their thoughts on attending the MS Society's Public Policy Conference  15:27

Share this episode  30:10

Next week  30:30

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/448

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

Support Jon at WALK MS
https://realtalkms.com/walkms

JOIN: Become an MS Activist
https://nationalmssociety.org/advocacy

LISTEN: RealTalk MS Episode 446 — MS Advocacy and the National MS Society's Public Policy Conference with Steffany Stern
https://realtalkms.com/446

SURVEY RESULTS: Cost Concerns and Coverage Changes: A Follow-Up Survey of ACA Marketplace Enrollees
https://www.kff.org/public-opinion/a-follow-up-survey-of-aca-marketplace-enrollees

PARTICIPATE: A Study to Determine How Well Different Fall Prevention Programs Work for People with Spinal Court Injury and Multiple Sclerosis
Email for More Information: DpQol-FallPrev@illionois.edu

JOIN: The RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms

REVIEW: Give RealTalk MS a rating and review
http://www.realtalkms.com/review

Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 448
Guests: David Silbaugh, Cliff Currie, and Michelle Constantine Hibbs