Reflecting on Connection and Community: Rally for Rare Orlando

March 8th, 2025, Nevus Outreach hosted a special Rally for Rare event in Orlando, Florida, and although it was a small gathering, the impact was anything but.

Lauren Isbell, our Executive Director, and I had the privilege of sharing dinner with a few incredible members of our Nevus community, including Katie Lane and her husband, David Lane, as well as board member Wiatt Bowers. It was an evening filled with laughter, heartfelt stories, and meaningful conversations about life with a nevus — especially what it was like growing up before Nevus Outreach existed.

As a parent of a child with a large nevus, I was particularly grateful to hear the wisdom and perspective of adult nevus owners. Listening to their experiences opened my eyes to how critical it is for Nevus Outreach to continue supporting individuals throughout their entire lives — not just in childhood. The advice, encouragement, and resilience shared that night left a lasting impression on us.

We also had the opportunity to talk about the upcoming Nevus Outreach International Conference, which will be held next year right here in Orlando. The excitement around having another opportunity to connect was undeniable, and we can’t wait to see even more of our community come together.

One of my biggest takeaways from this evening was the power of lifelong connection. While our mission has always centered around supporting families of children with a nevus, it became abundantly clear how critical it is to also support our community members as they grow into adulthood. The strength and insight that adult nevus owners can offer younger generations is invaluable, and it's something we, as an organization, are committed to fostering.

To everyone who joined us in Orlando — thank you. Your stories, your vulnerability, and your strength inspire us every day. We’re looking forward to more opportunities like this one, where we can continue to build bridges between generations and make sure that every nevus owner, at every stage of life, feels supported and seen.

We’ll see you again soon, Orlando — and we can't wait for the 2026 International Conference!

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Would you like to share your story?

Visit: nevus.org/shareyourrare