Making Waves for CMN: Raleigh’s Rally Brings Families Together

Lizy Coleman hosted a wonderful Rally for Rare event in Raleigh, NC, at the YMCA. Lizy was incredibly welcoming as the four families arrived, greeting each other like old friends. Most of us knew one another from social media, but it was our first meeting face-to-face. Once we all settled and grabbed some snacks, the kids all collected at one table, coloring and diving into board games. Laughter filled the air as they bonded over Jenga and their works of art. 

The event was not just about fun and games, though. We dedicated those hours to brainstorming ways to raise awareness for Congenital Melanocytic Nevi (CMN). For these families, the rally was a chance to connect, share stories, and offer support to one another. Lizy took out a notebook and started writing down our main concerns, things we’d like to see at the conference, and subjects we’d like to see in future blogs & The Dotted Line Magazine. 

One of my memorable moments was having Euran Daniels present, an adult with nevus (AWN) with years of experience living with GCMN. His suggestions and advice were invaluable to the conversations and subjects that were brought up. It was also the first time I got to experience a spouse of an AWN who is dedicated and passionate about creating a better tomorrow for the future generations of CMN. Thank you, Caroletta and Euran, for joining us!

The event was a powerful reminder of the purpose that brought us together: raising awareness for Congenital Melanocytic Nevi (CMN). For many at the rally, CMN isn’t just a diagnosis—it’s part of their story, a challenge they face daily. For their parents, it’s a journey filled with difficult choices, medical treatments, and, sometimes, surgeries. Yet, despite the struggles, what stood out most was the unwavering sense of community and support.

One subject in particular that came up frequently was how to make decisions regarding CMN. Half of the families were undergoing removal/ laser treatment and felt that their decisions were not as widely accepted in the community. It really opened up my eyes to both sides of the coin when it comes to making the big decisions for our nevus children and how we could better support our nevus families seeking removals. I’d love to write more blogs on this matter- so if you’d like to share your rare, please head over to nevus.org/shareyourrare so that we can help share your story with the nevus community!

As our conversation came to a close, Lizy extended a warm invitation to all the families to take advantage of the indoor heated pool at the YMCA. She had gone above and beyond by proactively educating the lifeguards about CMN (Congenital Melanocytic Nevus), ensuring that everyone felt safe and comfortable. The kids, free from any anxiety about their nevus, were able to dive in with full confidence, embracing the rare joy of swimming in the winter months. It was a refreshing experience, not only for the children but also for the parents, who appreciated seeing their kids so carefree and happy. In that moment, the pool became a space for pure fun and connection, where every splash was a reminder of the importance of understanding, inclusion, and community support. Lizy’s thoughtful efforts truly helped turn an ordinary day into a special one for everyone involved.

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Would you like to share your story?

Visit: nevus.org/shareyourrare