Episode 426: Fighting Her Way Through the Health Insurance Maze with Cassandra Ashby
Release Date: 10/27/2025
Episode 449: Putting People Affected by MS at the Center of MS Research with Sara Loud, Stephanie Buxhoeveden, and Hollie Schmidt
RealTalk MS
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. 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...
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Episode 448: At the National MS Society's Public Policy Conference with David, Cliff, and Michelle
RealTalk MS
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. I met so many truly amazing MS activists at...
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Episode 447: Walking with Many Sisters Toward a Cure with Brigitte Delaney
RealTalk MS
In 1988, there were just 42 Walk MS events, raising approximately $4 million. In 2025, there were 170 events across the country that raised over $30 million. As the largest private funder of MS research in the world, the National MS Society relies on funds raised at events like Walk MS to continue supporting the work that brings us closer to cures. This week, Brigitte Delaney, an amazing fundraiser and captain of the Many Sisters Walk MS team, shares her story, talks about the origin of the Many Sisters team, and offers her recipe for successful fundraising. We're also sharing...
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Episode 446: MS Advocacy and the National MS Society's Public Policy Conference with Steffany Stern
RealTalk MS
175 MS activists are heading to Washington, D.C. next week for the National MS Society’s Public Policy Conference. Their mission: to bring the concerns of the MS community directly to lawmakers on Capitol Hill. When it comes to the legislative support for healthcare and medical research, it's no secret that these are unusual times. Joining me to brief us on the National MS Society's ongoing advocacy efforts and give us a sneak peek at the specific legislative issues we'll be taking to Capitol Hill is the National MS Society's Vice President of Advocacy, Steffany Stern. We'll...
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Episode 445: It's MS Awareness Week with Kristine Werner Ozug and Kim, Kim, and Kim
RealTalk MS
It’s MS Awareness Week, and this year we’re diving into a theme that hits home for millions: Unseen MS. Multiple sclerosis is a master of disguise; it can be entirely invisible to the naked eye while remaining profoundly life-altering for the person living it. In this episode, we’re exploring the spectrum of the MS experience through two distinct, yet deeply connected stories. First, you'll hear from RealTalk MS team member Kristine Werner Ozug. Kristine shares what it’s like to navigate a world that doesn’t always see her struggle, and how her "mostly invisible"...
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Episode 444: Treating MS with a GLP-1 with Dr. Ellen Mowry
RealTalk MS
You know them by their trade names such as Ozempic, Wegovy, Mounjaro, and Zepbound. This class of medications is known as GLP-1 receptor agonists. And while they are best known for managing diabetes and promoting weight loss, researchers are finding that these drugs are also effective in a broad range of other health conditions. So, what about MS? My guest this week is Dr. Ellen Mowry, the principal investigator of a clinical trial to determine whether a GLP-1 drug can reduce brain inflammation and provide neuroprotection in people living with progressive MS. We're sharing details...
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Episode 443: The 2026 ACTRIMS Forum (Part 3) with Dr. Helen Tremlett, Dr. Ilana Katz Sand, and Kathy Smith
RealTalk MS
Welcome back to the third and final part of our coverage of the 2026 ACTRIMS Forum. This week's episode bridges the gap between groundbreaking clinical research and the nuanced reality of living with MS every day. First, we'll dive into the "before" and "after" of a diagnosis, starting with Dr. Helen Tremlett’s insights into the MS prodrome—those subtle, early signs that appear years before typical MS symptoms. We'll also talk with Dr. Tremlett about how other health conditions can predict long-term outcomes in sometimes surprising ways. Dr. Ilana Katz Sand shares her latest...
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Episode 442: The 2026 ACTRIMS Forum (Part 2) with Dr. Jeffrey Cohen, Dr. Daniel Ontaneda, and Kristine Werner Ozug
RealTalk MS
Welcome back to Part Two of our coverage of the 2026 ACTRIMS Forum. This week, we shift our focus to emerging therapies and clinical insights that are re-shaping the future of MS care. From the latest information on stem cell transplantation to evolving treatment strategies to the labels used to describe MS, we’re breaking down the complex science into the conversations that matter most to the MS community. Joining me to discuss one of the most significant presentations from the 2026 ACTRIMS Forum is Dr. Jeffrey Cohen, who opened the event with the Kenneth P. Johnson Memorial...
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Episode 441: The 2026 ACTRIMS Forum with Dr. Manuel Friese, Dr. Amit Bar-Or, and Dr. Haritha Desu
RealTalk MS
Last week, over 1,400 scientists and clinicians gathered in San Diego, California, at the 2026 Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum. This week, in Part One of our coverage, you'll hear from three of the experts who presented their research at the ACTRIMS Forum. Dr. Manuel Friese, a clinician-scientist at the Institute of Neuroimmunology and Multiple Sclerosis at the University Medical Center Hamburg-Eppendorf in Hamburg, Germany, where he serves as the Director of the Center for Molecular...
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Episode 440: An MS Specialist's Response to the FDA with Dr. William Conte
RealTalk MS
This past December, the FDA issued a Complete Response Letter to drug manufacturer Sanofi in response to Sanofi's application seeking approval for Tolebrutinib, the first in a new category of investigational disease-modifying therapies to undergo FDA review. A Complete Response Letter is an official letter from the FDA to a drug manufacturer stating that the agency can't approve a new medicine in its current form. It's not an outright "no" that kills a project; it's more like a "not yet." However, this Complete Response Letter raised some issues which, at first...
info_outlineSome disease-modifying therapies can change the trajectory of your MS journey. But gaining access to those medications isn't always as easy or straightforward as it should be. In the United States, insurance companies are most often the gatekeepers to prescription medications.
This week, Cassandra Ashby shares a story that many of you may already be too familiar with, as she takes us through her family's long, hard, and confusing struggle to get the DMT that her newly-diagnosed daughter's neurologist prescribed. I
We're also talking about the game-changing results of a study that demonstrate MS-related damage to the brain occurs years before the very first symptom becomes apparent. And we're explaining why this opens the door to treatment that may stop MS symptoms from even developing.
We're giving you a heads-up about changes to the way health records for MS patients are being coded, and how these changes are already creating obstacles to accessing the disease-modifying therapy that you may have been taking for months or years.
And we're reminding you that you still have time to register to participate virtually in tomorrow's historic meeting between people with MS and the FDA
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The sometimes overwhelming challenge of gaining access to the disease-modifying therapy that's been prescribed by your MS Specialist :22
Study results demonstrate MS-related brain damage occurs years before MS symptoms 1:22
What are ICD-10 codes, and why do the latest changes to these codes pose potential challenges for people living with MS? 5:52
You can participate virtually in tomorrow's meeting between people with MS and the FDA 9:23
Cassandra Ashby shares her family's long, hard, and confusing struggle with their insurance company 10:56
Share this episode 31:06
Next week's episode 31:26
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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: Attend the virtual Shaping Tomorrow Together meeting with the FDA
https://nmss.quorum.us/event/25463
SIGN UP: Become an MS Activist
https://nationalmssociety.org/advocacy
STUDY: Myelin Injury Precedes Axonal Injury and Symptomatic Onset in Multiple Sclerosis
https://nature.com/articles/s41591-025-04014-w
WATCH: The RealTalk MS ECTRIMS Extra Conversations video playlist on YouTube
https://realtalkms.com/ectrims2025
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RealTalk MS Episode 426
Guests: Cassandra Ashby