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

·38 min·3 clips

John Strum explains how iConquer MS turns people with MS from data points into research partners who design studies.

The episode opens with host John Strum introducing iConquer MS as a community where people with MS become research partners, not just patients. He first discusses the NIH's Strategic Plan for Disability Health Research, which emphasizes whole-person health, inclusion in research, interdisciplinary collaboration, and technology. Strum then summarizes a study analyzing the cost-effectiveness of anti-CD20 therapies like Ocrevus and Kesimpta, finding they are dominant over older drugs by preventing relapses and reducing long-term healthcare costs. After a sponsor message for ABLE Now, Strum introduces the iConquer MS leadership team: CEO Sarah Loud, Chief Science Officer Stephanie Buxhoeveden, and Vice President of Scientific Operations Hollie Schmidt. They describe iConquer MS as a people-powered research network with over 10,000 members who participate from home, helping design studies and share outcomes. The conversation centers on the 2026 ACTRIMS Forum theme 'MS at a Crossroads.' Buxhoeveden notes the critical shift toward researching progression, not just relapses, as a major unmet need. Schmidt emphasizes involving patients in research from start to finish to ensure impact. Loud discusses integrating lived experience with emerging technologies like AI. The Prada Initiative is highlighted as a process where community members prioritize research questions, such as on aging, diet, and symptoms. Schmidt explains the RIDE Council's role in promoting equity by including underrepresented groups. Buxhoeveden connects conference discussions on fatigue and cognition to data from iConquer MS's Reactivate study. Schmidt mentions opportunities for members to contribute to research on EBV vaccines and prodromal phases. Loud identifies challenges in aligning pharmaceutical interests with community priorities, citing the need for better biomarkers. The episode concludes with Strum thanking the guests and teasing a future interview on myelin repair research.

As heard by us

A grounded look at patient-centered MS research and the urgent turn toward progression.

RealTalk MS looks at what changes when people affected by multiple sclerosis help shape research, rather than being treated only as participants in it.

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Want to hear how people affected by MS can move from data points to research partners?

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