Porphyria Palooza was an educational and uplifting family reunion

My heart is so full, as is my head! Just a few weeks have passed since we held Porphyria Palooza, a gathering organized by the United Porphyrias Association (UPA), where I serve as president. This year’s event brought together patients and caregivers of every type of porphyria, as well as doctors, researchers, and industry partners, in Kansas City, Missouri, for three days in early October.

I’m still unpacking — not my suitcase, but everything I learned, the new relationships I forged, and the endless hugs we exchanged. Mind you, I didn’t expect any of this when my youngest son, Brady, was diagnosed with erythropoietic protoporphyria in 2009.

As UPA president, I arrived in Kansas City with my head occupied with the work that had to be done, including speaker notes, room setups, and doctor agendas. I knew every session title and every person delivering the discussions.

What I didn’t yet know was how that agenda would come to life with the people who joined us, and how all the porphyrias would join together as one porphyria family, or as we like to say, “porphamily.”

Attendees included old friends who couldn’t wait to meet again, people diagnosed decades ago who had never met another person with porphyria before, and folks who were recently diagnosed and just starting their journeys. Again and again, I heard, “I’ve never had this type of experience before.” Now they’re not alone. They may feel rare, but I hope they feel special now.

The impact of sharing our stories

Seven porphyria warriors stood before us and told their truth about how they got here: They spoke about symptoms no one could name, doctors who didn’t know what was happening, and answers that came too late. Still, each of them found a way through the darkness.

All weekend, people told us they shared the same stories as well. Somewhere between the sessions, the agenda stopped being a schedule and turned into a family reunion. Some arrived alone and left with a family.

Our Kids’ Zone never stopped moving so that parents could attend the sessions and be fully present.

On that Saturday night, a dance party filled the floor, with an added surprise: A full-sized “Porphy” mascot made his debut, entering the room to the classic song “We Are Family.” (And for those who needed some stillness, we also had designated areas for that, too.)

At our staff debriefing meeting afterward, we asked about moments that stuck with them. Every answer was about a person and a connection to another human being. UPA Operations Manager Nate Milam shared one particular story he said would stay in his heart forever: watching Milton Cubas deliver the story of his porphyria journey so beautifully and seeing everyone in the room connect with him. UPA Director of Community Engagement Katrina Parra described the countless pictures she took of people connecting. Each team member relayed different moments witnessed in roles they embraced with passion for their work and love for the members of this community.

Then came the moments that made me feel confident about our future. Our Junior Ambassadors, ages 12 to 17, welcomed newcomers, led activities, and spoke with poise and compassion far beyond their years. Watching them, I stopped wondering who will carry this work forward — because they already are.

At our patient-led research agenda tables, participants wrote responses to “What Matters to You.” This means that patients decided what should matter in research, and what they need in terms of resources. We are currently expanding that conversation across our entire community, and we’ll reveal what you told us on our UPA platforms, as well as share the results with researchers. This is our mission in its truest form: research shaped by the people who live it, so that every person with porphyria is diagnosed sooner, cared for by people who understand, and never feels alone again.

Taking it all home

That Sunday, we took it into the homestretch and used our time together until the very end. Morning conversations discussed practical tools to manage living with porphyria at home and takeaways from the weekend. And we even had a yearbook! In a take on the high school tradition, everyone signed each other’s yearbook before saying goodbye.

When I stood to lead the final session, “Until We Meet Again,” my throat tightened. My heart was overflowing with the names, faces, and stories of this amazing community, and my head held a long list of action items to fulfill their wishes and needs. Our team will carry those voices to every researcher, clinician, and partner we engage with for support.

For those who were able to attend, your part is even more important now! Follow up with that person you connected with. Put the tools you learned about to work. Take a deep breath, and know that you are never alone on this journey.

The family you found at Porphyria Palooza didn’t end when the weekend did. It just got tighter, and there is so much hard work and big love ahead.

This is “Hope in Action.” Until we meet again!

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Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.