Every week I get to do something I genuinely love: slow down and spotlight the people who are out there doing the work. Not the headline-grabbing, press-release kind of work — the real kind. The kind where you take your own diagnosis, your own fear, your own lived experience, and you turn it into fuel for someone else. This week’s three advocates are doing exactly that, across colorectal cancer, diabetes, and appendix cancer communities. Let’s get into it.
Loni Paulsen — Fight CRC as a 2027 Ambassador
Some announcements stop you mid-scroll and make you want to cheer out loud. Loni Paulsen’s post was one of those for me. Loni just became a 2027 Ambassador for Fight Colorectal Cancer — and if you know anything about the Fight CRC ambassador program, you know this isn’t an honorary title. It means showing up, speaking up, and carrying the colorectal cancer community’s voice into rooms where it matters. Loni brings something irreplaceable to that role: personal truth. There’s a reason Fight CRC builds their advocacy infrastructure around people like her. Ambassadors are the connective tissue between a diagnosis and real policy change, between a patient feeling alone at 3am and knowing that someone has been fighting for them in Washington. Loni stepping into this role is a big deal, and she deserves every bit of celebration this community can offer. Follow her on LinkedIn and watch what she does with this platform. I have a feeling we’re going to be hearing a lot more from her.
Simone Grapini-Goodman — Taking Diabetes Advocacy to Capitol Hill
Simone Grapini-Goodman just got back from Washington DC, and she did not go there to sightsee. She was part of a cohort of 16 Beyond Type 1 ambassadors who fanned out across dozens of congressional offices to make the case - in data, in argument, and in lived experience — for insulin affordability and protecting access to the technology that keeps people with diabetes alive. Read that again: dozens of congressional offices. That’s not a photo op. That’s organized, sustained, face-to-face advocacy of the highest order. Simone’s LinkedIn post used the phrase “#StrongerTogether” and I’ll be honest, I usually brace myself when I see hashtags like that, but in this context, it’s just true. You cannot do this work alone. It takes a room full of people who are willing to walk into a congressman’s office and say: this is my life, and your vote affects it. Simone is that person, and then some. If you work in the diabetes or chronic illness advocacy space, she’s one to follow closely. linkedin.com/in/simonegoodman
Lindsay Barad — A Rare Cancer Survivor Using Her Voice on a Public Stage
Appendix cancer is rare. I mean genuinely rare. The kind where a diagnosis can feel profoundly isolating because the community is smaller, the research is thinner, and sometimes it feels like the world doesn’t even know your cancer exists. That’s exactly why what Lindsay Barad did matters so much. Lindsay, an appendix cancer survivor, took the stage at the Living Proof 2026 event hosted by the Abdominal Cancers Alliance, and she spoke. Publicly. In front of a room of people. That might sound simple, but if you’ve ever had to stand up and say “I had this thing that almost nobody talks about, and here’s what it did to my life,” you know how much courage that takes. Lindsay didn’t keep her story private. She offered it up as proof, living proof, that people with rare abdominal cancers deserve to be seen, heard, and fought for. She’s building something important, and she’s doing it out loud. Follow her journey: linkedin.com/in/lindsaybarad
That’s Vol. 5 of the Advocacy at Work weekly spotlight, and honestly, every week I’m reminded that the patient advocacy world is full of people doing extraordinary things without nearly enough recognition.
If you know someone who deserves a spotlight — a caregiver, a survivor, a community builder, an advocate making noise in any disease space — I want to hear about them. Reply to this post, drop a comment, or find me on LinkedIn. Nominations are always open.
And if someone forwarded this to you: welcome. Subscribe at advocacyatwork.com so you never miss a week. These people deserve the audience.
