Mandy Montgomery

I am hosting Rally for Rare DC/DMV area February 28th 2026. Let’s connect! Can’t wait to see you there!

📣 Be on the lookout!
A Rally for Rare event may be coming to a community near you! Join us as we come together to support individuals and families affected by Congenital Melanocytic Nevus (CMN) and raise awareness for rare conditions.
These gatherings are all about connection, visibility, and showing the world that rare matters. 💜
Stay tuned for details and be ready to join us when Rally for Rare comes to your area!
🔗 Register & find events near you: nevus.org/events

🤠 The countdown is on, Kansas City! 🤠
Light the Night KC is almost here, and the excitement is building! Saddle up for an evening of line dancing, community, and shining a light on CMN awareness and research. 💛✨
🎟️ Don’t wait—secure your tickets before they’re gone: nevus.org/ltnkc

Rare Disease Day is my favorite day of the year because we get to celebrate my rare friends across the globe!!! I was born with Giant Congenital Melanocytic Nevus, as of last week I went through my 64th surgery. I am healing faster and better than expected! For the last years it became very apparent that something in my abdomen was growing abnormally. It became uncomfortable, painful, and very hard to hide. Today I feel more free and comfortable in my body than I ever have before. Thank you Dr. Gusenoff and his team for doing such an incredible job at the removal of the issues growing and reconstruction of my abdomen. I am so excited to wear clothes that fit my body properly, bathing suits, and to show off my spots in shorts this year! Being healthy is the best prize of all! I will be uploading content over the next weeks going more in depth about the treatments, surgeries, and the effects over the next months of my life. Please consider donating to They are providing life saving research and resources for people like me. The last photo is me seeing myself for the first time since surgery

You can’t wait until life isn’t hard anymore to be happy.

The time is near! This Sunday October 27th we will be performing our live soundtrack to the 1922 classic Nosferatu and I hope you’re ready to meet the Count live and in the flesh! Stoked to announce that our friend will be in house and taking pictures with anyone brave enough to enter. Come early and get a photo! This Sunday! // Doors open at 4:30. kicks off the music at 5:30. Free Admission. All Ages. Noseferatu Meet & Greet is at your own risk. 😎

Thanks for truly loving me for who I am. I always thought I was cool with being alone, then I had you.