This Week in Advocacy - Vol. 9
Three people who didn't wait for permission to start.
Every week I sit down to write this and I think, there are so many people quietly doing the work. Not waiting for permission, not waiting until they have a platform or a title or the perfect moment. Just showing up, over and over, because they know what it costs when no one does. This week’s three are exactly that kind of people. I’m glad they exist. I’m glad you get to know them.
Caroline’s entry into advocacy didn’t come from a conference or a fellowship program. It came from watching her dad go through a rectal cancer diagnosis and deciding she wanted to do something about the loneliness other kids feel in those moments. That’s where it starts for a lot of us, not with a strategy, but with a feeling you can’t shake.
What I love most about Caroline’s approach is how grounded it is. She doesn’t romanticize access or assume everyone can hop on a plane to D.C. She talks about handwritten letters to district offices. A steady, respectful email to a legislative aide. A real conversation in your own community. And she’s right, those things add up in ways that are easy to underestimate.
She said something I’ve been thinking about since I first read it: you don’t need a megaphone to be an effective leader or advocate, just passion. That’s it. That’s the whole framework. Caroline is proof that the most powerful advocates aren’t always the loudest ones, they’re the most consistent ones. She started from a place of wanting to bring hope to others, and she’s doing exactly that.
Eight years is a long time. It’s also not very long at all, depending on the day. Kelly Mellott looked back at a photo recently, one of those images that pulls you right back into the middle of the hardest stretch, and she let herself remember. The fear. The tears. The uncertainty about what life would look like on the other side of it.
What gets me about Kelly’s reflection is the part that comes after the remembering. She didn’t just survive; she absorbed it. She let the experience reshape how she sees her work, how she sees patients, how she thinks about what healthcare is actually for. And that perspective, the one you earn when you’re the person in the gown, doesn’t expire at discharge. It travels with you.
Kelly spends her days working to create more ordinary moments for patients, the kind of moments that feel small from the outside but are everything when you’re in the thick of a diagnosis. Behind every test result is a person hoping for more time, more life, more normal. She hasn’t forgotten that, you can tell. And she’s built her work around that memory.
Shuchi Rana and Ritesh Patel just launched something I think is going to matter. It’s a show built on a premise that sounds simple but is actually kind of radical in this industry: patients and caregivers aren’t end users. They’re experts. Full stop.
That framing changes everything — who you invite to the table, what questions you ask, what you consider a success. And the fact that their first guest is Grace Cordovano tells you they’re not just saying the right things. They’re putting their guest list where their values are.A few lines from Shuchi’s post have stuck with me.
Behind every data point is a person.
Innovation means little if it doesn’t improve someone’s life.
Sometimes the most transformative thing you can do is simply listen.
Those aren’t platitudes when they’re orienting your entire platform, they’re a mission statement. I’ll be following this show closely, and I have a feeling a lot of you will too. This is the kind of thing our space needs more of.
Honestly, narrowing it down was the hard part this week. There were far more worthy stories than I had room for. Pamela Deasy wrote beautifully about the sea as part of her recovery, a reminder that survivorship isn’t only what happens inside hospital walls, but the places and communities we return to. Kasey Pacheco spotlighted Claudia Cometa on the gap between what the system thinks it’s providing and what patients actually experience. Allison Rosen is heading to COSMO 2026 to talk about trusted voices and real patient–clinician partnership. And the Patient Advocate Foundation shared the origin story behind Nancy Davenport-Ennis being challenged to “pass a little bill,” proof of what happens when the patient’s perspective finally gets a seat at the table. When a single week holds this many voices doing this kind of work, it’s a good sign for all of us.
If someone in your orbit is doing the quiet, steady, meaningful work of patient advocacy — please send them my way. Reply below or submit them to be included next week. And if you’re not subscribed yet, this is your nudge. New voices, every week. Let’s keep celebrating the people who show up.
I LOVE "you don’t need a megaphone to be an effective leader or advocate, just passion"! Thanks for sharing these EXTRAordinary people. =)