Going to DC for Rare Disease Week - Ep. 28

Treatment Fatigue: Doing the Hard Thing Forever With No Finish Line - Ep. 34

Most hard things come with a finish line — six rounds, twelve weeks, "get through this and you're on the other side." I don't get that sentence. My treatment doesn't end; it just continues, for as long as my body needs it. This episode is about treatment fatigue, not the kind where one appointment is brutal, but the kind where the hard part is the forever of it. And how I've learned to carry that without letting it stop me.

High Liver Enzymes on Interferon: Why I Had to Stop Treatment - Ep. 33

When you treat a cancer that can't be cured, you don't just manage the disease, you manage what the treatment does to the rest of you. My liver numbers climbed high enough that I had to come off my medication entirely. This episode is the cascade that followed: the referral, months of waiting, vials of blood, a FibroScan, and the relief of an answer.

150 Appointments: What Rare Disease Treatment Actually Costs - Ep. 32

150 in-office treatment appointments in a single year. Three days a week, every week, driving to another city because there's no NBUVB light where I live — or where I work. In this episode, I'm talking about what treatment actually costs: the miles, the time, the scheduling, the money. And the harder question underneath all of it — whose job actually lets them do this? Because not everyone has the flexibility I do. And that matters.

Two Days in the Halls of Power - Ep. 31

What does it actually look like to walk into a state legislature and fight for rare disease patients? This episode, I share what I learned from two days advocating at the NC Legislature with the Everylife Foundation for Rare Diseases — what surprised me about how state lawmakers think, why the knowledge gap isn't what I expected, and what a single staffer's comment about a stack of one-pagers taught me about what advocacy actually requires. Plus: three NC bills that still need your voice.

Inside Rare Disease Week: Taking Advocacy to Capitol Hill (Part 2), Ep. 30

In Part 2 of my Rare Disease Week experience, I take you inside what it’s actually like meeting with lawmakers and their staff on Capitol Hill. I talk about how patient stories influence policy, how advocacy conversations unfold, and why showing up matters for the rare disease community.