top of page


Men & CMN: The Way We Carry It- Nevus Dad, Kenny Price's Story
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.

Kimi Phelps
Jun 154 min read


More Than a Conference, A Lifelong Connection.
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.

Kimi Phelps
May 284 min read
bottom of page