Facing the holidays can look different for every family in our nevus community. It may mean preparing for stares, holding onto moments of joy in the midst of medical uncertainty, or learning how to carry love through grief and absence. However this season finds you—celebrating loudly, moving slowly, or simply surviving—please know that you are seen. There is room here for every version of this journey, this holiday season and always.

When Kenny Price first learned that his newborn son Charlie had a giant congenital melanocytic nevus (CMN), the future felt uncertain. Faced with fear, misinformation, and a rare diagnosis few understood, Kenny and his family began a journey that would span 22 years. Through surgeries, faith, friendship, and unwavering determination, he discovered that true strength isn't about having all the answers but showing up every day for the people you love.

For rare disease families, conference is more than an event — it can become the beginning of lifelong friendship, understanding, and support. This heartfelt story follows two families who met at their very first Nevus Outreach Conference when their sons, both diagnosed with CMN and NCM, were just infants. Sixteen years later, their connection continues to remind us that community can change the rare disease journey forever.