Every week I put together this roundup because I genuinely believe the people doing this work deserve to be seen. Not as statistics. Not as case studies. As people who woke up one day, usually on the worst day of their lives, and decided to turn it into something. This week’s three advocates are doing exactly that — in conference rooms, on Capitol Hill, and across social media — and I want you to know their names.
Matt Paradise | LinkedIn
Matt has been named the Patient Keynote Speaker at the TargetCancer Foundation’s 5th Annual Think Tank on Advancing Precision Medicine in Rare Cancers, happening November 12. His talk is called “The Life Inside the Science,” and that title alone tells you everything about why he belongs in that room.
Here’s the thing about rare cancer spaces: they can get very clinical, very fast. And that’s not a criticism, the science matters enormously. But Matt is walking into that room to remind everyone present that behind every data point is a person who waited for a phone call, who sat in a car outside a clinic too scared to go in, who had to explain a diagnosis to someone they love using words they’d only learned a week earlier. His talk is rooted in his own rare cancer experience, and he’s making the case that patients don’t experience cancer as science alone. The fear, the uncertainty, the relationships, the impossible decisions — all of it is happening alongside the science, not separate from it. That’s the perspective a room full of researchers and clinicians needs to hear, and Matt is the one delivering it. I can’t wait to follow how this lands.
Jeanelle Adams | LinkedIn
Jeanelle Adams is a triple-negative breast cancer survivor, a current clinical trial participant, and a policy advocate from Newark, New Jersey, and last week she was one of more than 750 cancer advocates who showed up on Capitol Hill for ACS CAN’s Cancer Lobby Day.
She went there to push for increased cancer research funding and the bipartisan Clinical Trial Modernization Act, and she didn’t just go with a talking point. She went with a framework. Her framing is that stories matter, but they have to lead somewhere. And she carried more than her own story, she carried the voices of patients, caregivers, and underserved communities who face the practical, unglamorous barriers that keep people out of trials: transportation, lodging, the cost of treatment-related expenses that no one budgets for. These aren’t small obstacles. They are the reason clinical trials have a diversity problem. Jeanelle understands that, and she’s making sure the people with the power to change it understand it too. She’s exactly the kind of advocate who makes Lobby Day worth having, someone who shows up knowing what she’s asking for and why it matters beyond herself.
Wenora Johnson | LinkedIn
Wenora Johnson was featured as Day 20 of the Social Health Network’s #50DaysOfSocialHealth, and if you don’t already know her work, this is your introduction.
Wenora is a Lynch syndrome advocate and cancer research patient advocate leader who has spent years doing the slow, unglamorous work of turning lived experience into structural change. The line she’s known for, that patients shouldn’t just have a seat at the table, they should have a voice in building it, is the kind of thing that sounds quotable until you realize she’s actually living it out. There’s a difference between being invited into a room and having a say in how the room is designed. Wenora is fighting for the second thing. The recognition came through Julie Croner and the Social Health Network, and in typical Wenora fashion, she pointed straight back outward, talking about the ripple effect of people sharing their stories and what it makes possible. That instinct, to celebrate the community rather than just the moment, is what makes her the kind of leader other advocates want to follow.
If one of these three sparked something for you, go follow them. Leave them a comment. Tell them Tim sent you.
And if you know someone doing work like this — a patient advocate, a caregiver advocate, a community builder quietly changing things from the inside — nominate them for a future edition. You can reach me at advocacyatwork.com or comment below. I read every one.
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