Advocacy
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Two Days in the Halls of Power – Ep. 31
State legislators know rare disease exists. They don't know what it costs you to live with it. That's the gap — and how patients can fill it.
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Inside Rare Disease Week: Taking Advocacy to Capitol Hill (Part 2), Ep. 30
I share what it’s like meeting with lawmakers during Rare Disease Week and how patient advocates help move rare disease policy forward on Capitol Hill.
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Inside Rare Disease Week: A Patient Advocate on Capitol Hill (Part 1), Ep. 29
What really happens during Rare Disease Week? I share my experience advocating on Capitol Hill and why patient advocates are vital in shaping rare disease policy.
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Going to DC for Rare Disease Week, Ep. 28
Before heading to DC for Rare Disease Week on Capitol Hill, I share what it means to prepare as a first-time rare disease advocate—why insurance denials matter, what the Protect Rare Act aims to change, and how patients can engage in advocacy at their own pace.
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One Year Anniversary of Fine, But Not Fine – Ep. 27
One year into Fine, But Not Fine, I reflect on why I started this podcast, what it’s taught me about living with chronic illness, and the frustration of navigating healthcare and insurance. This episode explores advocacy, honesty, and the reality that life keeps on living—even when nothing feels resolved.
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I’ve Joined the Board of Directors of the Cutaneous Lymphoma Foundation – Ep. 17
've joined the Board of Directors for the Cutaneous Lymphoma Foundation, and in this episode, I'm sharing why that matters and what it means for patients like us.
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Why Advocacy Matters – Ep. 16
Advocacy isn't just a buzzword. It's a lifeline for those of us living with rare diseases and chronic illness. I talk about how real change doesn't only come from big moments on Capitol Hill, it starts in the everyday: telling your story, joining forces with patient groups, challenging broken systems.