Gathering of Hope and Awareness: As We Rally for Rare

We had the pleasure of kicking off the first of 2025’s Rally for Rare events on February 15th! The freezing rain did not stop the 8 families from making their long drives over to the rally. For most of the families that joined us, this was the very first time they’d attended a Nevus Outreach event in person. Several were bouncing nevus babies/toddlers on their laps while the older kid group (5-9-year-olds) all bonded over their love of tortilla chips. Our only AWN in the group, Mandy Montgomery, shared her inspirational nevus journey with the table. Her story will be found in The Dotted Line magazine’s Spring 2025 edition...so stay tuned!

Nevus Owner Weston's mom, Kimi, states - "Looking up from my plate of delicious tacos, I saw how we were all engaged in conversation, learning more about the family next to us, making plans to meet in the weeks and months to come. The sense of community and support was palpable, as each person found comfort in the shared experiences and understanding that only those in similar situations could provide. The rally was not just a gathering but a powerful reminder of the strength found in unity and the importance of raising awareness for rare conditions."

As the event drew to a close, the families exchanged contact information, ensuring that the connections made would extend beyond the confines of the rally. Future gatherings were enthusiastically discussed, with everyone eager to continue building these newfound friendships. Plans are being made for an in-person ice cream social this summer!

Looking ahead

The anticipation for the Nevus Outreach Conference 2025 in Orlando was electric. The prospect of learning from experts, sharing stories, and participating in workshops tailored to their needs promised to be an enriching experience for all attendees. The rally in Washington, D.C., had not only set the tone for the year but had also laid the foundation for a supportive network that would continue to grow.

As everyone parted ways, there was a shared sense of hope and determination to make a difference, not only in their own lives but also in the broader community. The Rally for Rare had accomplished its goal of fostering awareness and connection, leaving everyone inspired and eager for the future.

in Washington, D.C.