NOTE FROM THE EXECUTIVE DIRECTOR

Gratitude, Recovery, and a Promise to Keep Going

Dear APF Community,

Over the past few months, you may have noticed that I haven’t been as visible or present as usual — few emails, fewer appearances, and an absence from our podcast. I want to take a moment to share why that is, and to thank you for your continued support, patience, and trust during this time.

Earlier this year, I had to have two serious cardiac surgeries — including open-heart surgery — followed by additional interventions to address complications during recovery. It has been a physically and emotionally demanding experience, made even more complex by my having porphyria — something many of you can relate to when facing other major health challenges.

The road to healing has been longer than expected, and I’m still on that journey.

To ensure a full recovery, I’ve had to take a step back from my usual pace and temporarily reduce my workload to focus on healing. But I want to assure you that I’m still here, still leading, and still deeply committed to the mission of the American Porphyria Foundation.

Thankfully, I haven’t had to do this alone. Our co-founder, former Executive Director, and my dear friend Desiree Lyon — who also serves on the Board of Trustees — has graciously stepped in during this time. Her wisdom, experience, and deep love for this community, along with the support of the rest of our Board of Trustees — Paul Stickler, Warren Hudson, James Young, Diana Ijames, and Ron Polly — have helped keep everything moving forward so that no part of our mission has been left behind. I could not be more grateful for their support — and for yours.

When I return, I look forward to sharing more of this journey — including how porphyria impacted my recovery — in a future episode of our podcast, RARELY DISCUSSED, with my co-host Andrew McManamon.

You may have noticed I haven’t been part of recent episodes, and I appreciate your patience during this time. Andrew has done a wonderful job continuing the podcast while I’ve been away, and I’m so grateful for his thoughtful work and dedication to our listeners and guests. I’ve missed being part of those conversations and can’t wait to jump back into the podcast with Andrew and our amazing guests.

So many in our community face complex medical issues beyond porphyria itself, and I hope that sharing my experience can support others who are navigating that intersection.

To our patients, families, physicians, researchers, advisory board members, and industry partners — please know that I remain dedicated to every one of you. I look forward to returning to full capacity as soon as I’m able and continuing our work together to improve the lives of all those impacted by porphyria.

Until then, the fierce resilience of our Porphyria family reminds me every day why this work matters and how honored I am to be a part of it. I can’t wait to come back stronger than ever!

With heartfelt gratitude,

Nicole Castellano
Executive Director
American Porphyria Foundation