AMPLIFY 2026: For a Few Days, None of Us Were Rare

There are a few moments that happen at every Nevus Outreach Conference.

A family walks through the doors for the first time, perhaps having never met another child with congenital melanocytic nevi (CMN). They may have spent years explaining their child's birthmark to strangers, searching online for answers, navigating difficult medical decisions, or sitting across from healthcare providers who have never treated someone quite like them.

AND

An adult with CMN may arrive after spending much of their life without knowing another person who truly understands what it means to live with a visible difference.

In both these scenarios, they look around and realize there are people everywhere who understand. No explanation is necessary. That moment, and everything it represents, is why we gather.

In July, the Nevus Outreach community came together in Orlando, Florida, for AMPLIFY 2026, our largest (nearly 500 attendees) and most successful conference to date. For three days, individuals with CMN, parents, children, siblings, grandparents, partners, medical professionals, advocates, and friends filled the Renaissance Orlando at SeaWorld. We came to learn, ask questions, share experiences, reconnect with old friends, make new ones, and help shape what comes next for people affected by CMN and related conditions.

But somewhere between the educational sessions, pool parties, late-night conversations, hugs, introductions, and shared experiences, something even bigger happened. For a few days, people who spend much of their lives being told they are rare found themselves surrounded by others who understood.

Answers to Questions and Promising Research

Families affected by a rare condition often become experts out of necessity. They learn medical terminology they never expected to know, research treatment options, navigate complicated decisions, advocate in doctors' offices and schools, and search for reliable information about a condition most people have never heard of.

At AMPLIFY, we brought information and experts directly to our community. Attendees explored the foundations of CMN through CMN 101, learned about shared decision-making, neurological considerations, surgical removal, wound care, cryotherapy, and emerging approaches to CMN management. Care Coordination Conversations created additional opportunities for attendees to talk about their individual care journeys, while other sessions explored questions surrounding CMN that researchers and medical professionals are still working to understand.

The goal was never for anyone to leave Orlando knowing everything. We wanted people to leave knowing more than they did when they arrived and feeling better prepared to ask questions, advocate for themselves or their loved ones, and participate confidently in decisions about their care. Knowledge doesn't eliminate every uncertainty that comes with CMN, but it can make the road ahead feel a little less overwhelming.

The Conversations Between the Sessions

If you looked only at the conference agenda, you might think the educational sessions were the main event. They were incredibly important, but some of the most meaningful moments at a Nevus Outreach Conference never happen from a stage.

They happen when a parent sits beside another parent who understands exactly what they are feeling. They happen when an adult with CMN shares an experience someone else thought they were alone in having. They happen when teenagers start talking and discover they don't have to explain themselves first. They happen over lunch, beside the pool, walking between sessions, and sometimes long after the day's programming is officially over.

Throughout AMPLIFY, we intentionally created spaces for those connections. Campfire Chats brought together moms, dads, grandparents, significant others, teens, and nevus owners. Adults with Nevus had opportunities to connect with one another, and mentorship activities helped attendees begin building relationships from the start of the conference.

Those spaces weren't an afterthought. They are an essential part of why we gather. Sometimes the most valuable thing someone can hear at a conference isn't delivered through a microphone. Sometimes it is another person looking at them and saying, "Me too."

Making Room for Every CMN Journey

One of the most important things our community continues to teach us is that there is no single CMN experience and no one "right" way to navigate the journey. Some families are considering removal while others aren't. Some are navigating neurological complications. Some have a new diagnosis and aren't sure which questions to ask yet. Parents may be watching their children become teenagers and begin taking ownership of their own medical decisions and stories, while adults with CMN may be unpacking experiences they have carried since childhood.

AMPLIFY made room for those different experiences. Conference programming addressed not only medical care, but family functioning, sibling experiences, parenting teens and tweens, identity, resilience, emotional well-being, and living with a visible difference. Roundtables created opportunities for deeper conversations about removal, NCM, peer support, youth engagement, and the experiences of adults living with CMN.

Supporting people affected by CMN means caring about the whole person, not simply a diagnosis. CMN may be part of someone's story, but it should never be the only part.

AMPLIFY Was More Than a Theme

We didn't want our community to come to Orlando simply to hear what Nevus Outreach had to say. We wanted to hear from them, too.

Throughout the conference, attendees were invited into conversations about what comes next. We asked how we can better engage young people, strengthen peer support, continue building the Adults with Nevus community, improve future conferences, and create stronger connections across the global CMN community. We also explored how individuals can tell their own stories in ways that feel authentic, empowering, and impactful.

Through our Skinfluencer sessions, community roundtables, and Nevus Outreach Asks conversations, attendees weren't passive participants in the conference. They helped us think about the future of the organization and the community it serves.

That is an important part of what AMPLIFY means to us. Nevus Outreach should never simply speak for the CMN community. We want to listen to it, learn from it, build alongside it, and create opportunities for people affected by CMN to use their own voices.

Making Room for Joy

Life with CMN isn't only about appointments, procedures, research, and difficult conversations, and neither was our conference. There was pizza and ice cream, a pool party, professional family photos, sunrise yoga, a talent show, a salon, red carpet photos, an awards celebration, and a dance floor that stayed busy late into our final night together.

Those moments might look like the "fun stuff" on an agenda, but they matter. A child jumping into the pool with another child who has CMN matters. A teenager laughing with a new friend matters. A family having a beautiful photograph taken together matters. So does watching someone you love take the stage at the talent show, dressing up for the red carpet, celebrating members of our community, and dancing together at the end of an incredible few days.

Our younger attendees also had an experience of their own through Camp Amplify, with programming that gave kids opportunities to build friendships, have adventures, and simply be kids. For some children, the conference may be one of the few times they are surrounded by other young people and families affected by CMN. Growing up knowing there are other people like you can be powerful.

Joy isn't separate from our mission. It's part of building a community where people feel like they belong.

What We Built in Orlando Doesn't Stay in Orlando

Eventually, every conference has to end. The final sessions wrapped up, awards were given, the music stopped, suitcases were packed, and there were long hugs in the lobby and promises to keep in touch. But you don't leave a Nevus Outreach Conference empty-handed.

People went home with new names in their phones, questions to take back to their medical teams, resources and information they didn't have before, photographs, inside jokes, and friendships that may last for years. Some left knowing more about CMN. Others left with a better understanding of their own journey. Hopefully, everyone left feeling a little less alone.

None of it happens by accident. AMPLIFY was possible because of the medical professionals and experts who shared their knowledge, the volunteers and community leaders who gave their time, the partners and supporters who invested in our mission, and the staff who spent months building an experience worthy of this community. Most importantly, it happened because people affected by CMN trusted us with their time, their questions, their experiences, their stories, and their families. For that, we are incredibly grateful.

We came to Orlando from different places and at different points in our CMN journeys. Some people arrived knowing dozens of people, while others walked through the doors knowing no one. For a few days, though, none of us were rare. We were simply together.

Perhaps that is one of the most powerful things the Nevus Outreach Conference can do. It gives people information and access to experts, but it also gives them something that can be much harder to find when living with a rare condition:

a place where they belong.

And while saying goodbye is never easy, this time we got to say something else:

"See you in Portland!"

In 2028, the Nevus Outreach community will come together again July 28- August 1 in Portland, Oregon, for our next conference. Whether Portland will be your very first Nevus Outreach Conference or another reunion with people who have become family, we hope you'll be there.

Until then, keep learning, keep connecting, keep using your voice, and keep making room for one another.

We can't wait to see what we build together in Portland in 2028.

https://youtu.be/nigAPmKkmfw

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