The Power of Connection: Reflecting on the Rally for Rare Experience in Kansas City, MO

Four children smile, sitting on a brick ledge, surrounded by dry bushes. They wear colorful clothing on a sunny day.

In Missouri, the Rally for Rare event unfolded flawlessly, exceeding all expectations and creating an unforgettable experience for everyone involved! Attendees from 5 different states came together, creating an environment where conversations flowed naturally, even among the nevus families who met for the very first time in person.

The host, Alyssa Huser, said that “one of the most memorable aspects was watching the children play and witnessing the interactions among attendees, which felt more like a family gathering than a formal event.”

This year, the event was held at a new venue to better accommodate families with young children. It created a more relaxed and comfortable setting for all the families involved. The event's most significant impact was the sense of connection it fostered. Being able to sit and converse with other families who are navigating similar experiences provided a deep sense of understanding and solidarity. While online interactions are valuable, the connections made in person are incomparable.

The opportunity to connect was a key motivator for attending the rally. It provided a safe space to converse, share successes, and discuss challenges in a supportive environment. The families felt fortunate to connect in one location, from five different states, reinforcing the sense of community that is often hard to find, especially when dealing with such unique circumstances.

A group of adults and children smiling outside a building with a fire pit visible. Casual attire, colorful shirts. Bright and sunny day.

Throughout the event, Alyssa had the privilege of sharing her experience as a volunteer and discussing how this role has provided her with purpose during the CMN/NCM diagnosis of her son Jace. Many of the attendees in the group agree that becoming involved has helped them along their own nevus journeys, and how important it has been for them to find support and resources through the Nevus Outreach.

The highlight of the event was the opportunity to connect with others while the children played. Aside from the brief presentations by Lisa and Alyssa—where they discussed topics related to NOOR, the Conference, and volunteering—the event was more focused on fostering relationships than structured activities or speakers.

As the families parted ways, they all left with a deep sense of fulfillment, carrying with them the knowledge that their involvement is not only valued but truly appreciated within this close-knit nevus community, where every contribution helps strengthen the bonds that unite them all.