The hardest part of putting this together isn’t finding people worth featuring. It’s cutting the list down. This week I had more than I could fit, which says something good about where this work is heading. Here are three I keep thinking about.
Carolyn Taylor is heading to the World Cancer Congress in Hong Kong, and what she’s bringing is a masterclass in what “meaningful engagement” looks like once you strip the buzzword off it. Peer support evidence out of Rwanda and Ethiopia. Caregiver approaches co-designed across Latin America. Patients and partners built into national cancer planning instead of consulted after the fact. Three different continents, one idea underneath all of it: the people a system is meant to serve should help build it. That’s the whole game, and she’s showing what it looks like in practice.
Jen Fisher kicked off Baptist Health’s Extraordinary Voices series, and she said something I haven’t stopped turning over — that hope is a discipline, not a mood. She talked about holding hope and hard truth at the same time, and about how you keep pouring into other people without running your own tank dry. Ten years ago she was a patient in that same building. Going back to talk about hope as a practice instead of living it minute by minute — I understand exactly what that walk feels like.
Linda Bohannon joined the planning side of the Amgen Advocacy Summit this year, ten months out from a triple-negative breast cancer diagnosis. She described it as her first time stepping into an in-person room as her new self. I think a lot about that — leadership and lived experience showing up in the same person, and the quiet courage it takes to be seen as someone changed. She’s doing both at once, and doing it out loud.
Different corners of this work — global systems, hope as a discipline, leadership through survivorship — but the same thread runs through all three: advocacy done with people, not just for them. Go read what they’re doing. Better yet, tell them it landed.
That’s Vol. 11 — three people I couldn’t stop thinking about this week. If one of them got to you, don’t just nod and scroll. Go follow them. Dig into their work. Pass their story to someone who needs it. That’s how this community grows.
And if you know someone doing advocacy work that deserves the light, in any disease community, any space, any form, nominate them for a future issue. Drop it in the comments or message me. Nothing gets past me.
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