The Rally for Rare event in Boston was just the beginning. I look forward to many more gatherings, conversations, and moments of support that reinforce what I have learned on this journey: We are never alone, and together, we can make a difference.

Rare Disease Day rally bloomed with connection. Though our conditions are rare, isolation vanished as we gathered, a small group united by something deep. Stories, hugs, laughter, tears – we created space to be seen. At "Tons of Fun," strangers found kinship, honoring Allison's joyful, fierce spirit. Though she's gone, her strength lives on, reminding us that "rare" doesn't mean alone.

Become a Challenge Champion for Nevus Outreach by raising awareness and funds to support our mission in a fun way.

“If I was going to run this race, I was going to run it for Raya. This is the perfect platform to raise awareness and funds for CMN.

CMN Awareness Day! Mark Sept 28th & join the challenge (Sept 22-28): share stories, raise awareness & celebrate the CMN community!