Born in Los Angeles with CMN, Valentina endured seven cosmetic surgeries her doctors said were “necessary.” Looking back, she knows they weren’t. After losing her mother to breast cancer, her sisters became her greatest support. Now 26, Valentina is a photographer and filmmaker in the Pacific Northwest. Finding Nevus Outreach felt like surfacing for air—she’s no longer alone. Her CMN, once a source of fear, has become her superpower of courage and resilience.

When Caitlyn Neuendorf welcomed her daughter Reece, her instincts told her something wasn’t right. What began as reassurance from doctors quickly turned into fear as specialists diagnosed Reece with Giant Congenital Melanocytic Nevi (GCMN), a rare condition affecting 1 in 500,000 births. Their journey reflects the isolation, anxiety, and resilience families face—and the hope found through connection and community.

While preparing for a Nevus Neighbor event, we rediscovered Stacey’s 2011 post about living with a foot GCMN—and connected her with Kayla, a mom seeking support for her daughter’s similar condition. That message sparked a powerful connection rooted in shared experience, empathy, and hope. It’s moments like these that show how Nevus Outreach empowers and unites, ensuring no one walks this journey alone

Learn more about our nevus conference host family as you prepare to join us in Orlando 2026.

Summer just got a whole lot warmer — Campfire Chats are here! Join Nevus Outreach all summer long for our new Live Series, featuring powerful conversations, expert insights, and real stories from the CMN community. From mental health to medical research, advocacy to connection — there’s something for everyone.

As the attendees talked, it became clear just how powerful these small gatherings can be. Stories were exchanged, support was offered, and a strong sense of understanding filled the room.

The Nevus Outreach Rally for Rare New York, was filled with warmth, laughter, and an incredible sense of community.

The recent Nevus Outreach rally in Denver radiated warmth, connection, and a powerful sense of community. For many families, including first-time attendees, the event offered a unique opportunity to connect in person with others who share similar experiences.

The Rally for Rare event in Boston was just the beginning. I look forward to many more gatherings, conversations, and moments of support that reinforce what I have learned on this journey: We are never alone, and together, we can make a difference.

Rare Disease Day rally bloomed with connection. Though our conditions are rare, isolation vanished as we gathered, a small group united by something deep. Stories, hugs, laughter, tears – we created space to be seen. At "Tons of Fun," strangers found kinship, honoring Allison's joyful, fierce spirit. Though she's gone, her strength lives on, reminding us that "rare" doesn't mean alone.

Nevus policy impacts research, care, life quality. This blog breaks down legislation, progress, and how YOU can advocate. Your voice shapes the future. Stay informed, get involved, drive progress.