Stronger Together: Building a Nevus Community One Story at a Time
- Nevus Outreach
- May 6
- 2 min read
The Nevus Outreach Rally for Rare New York, was filled with warmth, laughter, and an incredible sense of community.
For many attendees, including the Kowpak family attending their very first event, the highlight was a captivating entertainer who brought music, laughter, and interactive fun for kids with instruments and a child-friendly comedy skit. But beyond the entertainment, the most memorable moments came from the connections formed, especially with Luis, a 40-year-old adult living with CMN and NCM, who shared his life experiences and bonded with the three young nevus owners in attendance.
Luis’s story stood out as a powerful reminder of the strength and resilience within the nevus community. Having only met one other nevus owner in his life—during a medical procedure—Luis was deeply moved to finally connect with others who share his journey. His presence offered immense reassurance to parents, who found hope and support in hearing about his challenges and triumphs. Attendees expressed a strong desire to keep this newfound connection alive, discussing ideas like a future hike north of the city and a Polar Bear Plunge event to raise awareness in early 2026.
The event, beautifully organized by Dr. Finelt and Jamie Kowpak, offered a perfect balance of education, expert insight, and fun. With doctors like Dr. Finelt and Dr. Khakoo present, families felt surrounded by knowledgeable and compassionate leaders in the field. Educational materials from NOOR were shared, sparking interest in the July 2026 Nevus Outreach Conference. Looking ahead, the New York nevus families are planning biannual gatherings to continue building community and spreading awareness. With new events on the horizon and stories like Luis’s leading the way, the rally has ignited a wave of unity and hope that will carry the mission forward.
Would you like to share your story?
Visit: nevus.org/shareyourrare
Luis's story made me think a lot about among us loneliness that adults living with CMN might experience. I wonder if Nevus Outreach will have more activities specifically for adults in this community in the future?
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