Every week I sit down to write this newsletter and I think about the moment I stopped being a patient and started being an advocate. It wasn’t dramatic. It was just a decision, a quiet one, that the experience I’d been through meant something, and that meaning was only real if I did something with it. The three people I’m spotlighting this week made that same decision, and then they got to work. This is Vol. 10. Let’s go.
Nellie Gbadebo — Meeting People Where They Actually Are
Nellie Gbadebo built something I genuinely wish existed in more spaces: The Girls’ Bathroom (TGB). The name alone tells you everything about her instinct, she didn’t try to pull people into a clinical setting and talk at them about their health. She found the place where women already gather, already trust each other, already talk freely, and she made that the entry point.
TGB is grounded in an action-over-awareness thesis, which means Nellie isn’t interested in putting a ribbon on something and calling it a win. She wants behavior change. And the numbers back her up. Over 500 people registered for TGB, and the outcomes are striking: more than 97% reported feeling more confident engaging with healthcare services after speaking with clinicians at the event. More than 97% committed to checking their chest monthly. More than 97% said they now feel more confident recognizing the signs and symptoms of breast cancer.
That’s not a campaign. That’s a transformation — at scale, rooted in culture, built by someone who understands that trust is the real infrastructure of healthcare access.
Follow Nellie on LinkedIn: https://www.linkedin.com/in/nellie-gbadebo/
Valarie Traynham — Earning a Seat at the Research Table
Valarie Traynham showed up to an AACR/ASCO research workshop and did what the best advocates do: she learned, she listened, and then she shared what she took away so the rest of us could benefit too.
Her takeaways zeroed in on two things that matter enormously in clinical research, endpoint selection and participant burden. These aren’t soft, feel-good topics. These are the structural decisions that determine whether a study actually answers the questions patients need answered, and whether the people enrolled in that study are treated like partners or like data points.
Valarie is a survivor. She brings lived expertise into rooms that have historically been designed without her. But what strikes me most isn’t just that she’s in those rooms, it’s that she’s doing the homework to understand the science deeply enough to push back on it meaningfully. That combination of personal experience and intellectual rigor is exactly what the research world needs more of, and exactly what patient advocacy at its best looks like.
Follow Valarie on LinkedIn: https://www.linkedin.com/in/valarietraynham/
Linda Hurtado — Using the Platform You Have
Fifteen years. That’s how long Linda Hurtado has lived on the other side of a breast cancer diagnosis. And all that time, she’s been using the platform she has, a Fox 13 anchor desk, to do something simple and powerful: tell people to get screened.
Linda was recently recognized as a Tampa Bay champion of early detection, spotlighted by ACS Florida VP Wendy Johnson. The recognition is well-deserved, but I want to say something about what Linda actually represents. Not every advocate goes to conferences or writes policy briefs or runs nonprofits. Some advocates just refuse to let their story be private. They show up every day to a job that puts them in front of people, and they use that visibility in service of something bigger than the broadcast.
Early detection saves lives. Linda knows that personally. And she keeps saying it, over and over, to anyone who will listen. That consistency, that refusal to move on, is its own kind of courage.
Follow Linda on LinkedIn: https://www.linkedin.com/in/linda-hurtado-80422949/
Those are your three for Vol. 10. If one of them moved you, go follow them. Engage with their work. Share their stories. That’s how this community grows.
And if you know someone doing advocacy work that deserves a spotlight, in any disease community, any space, any form, nominate them for a future issue. Drop it in the comments or message me. I read everything.
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