Lighting Up for Rare Disease Awareness Month

Rare Disease Day isn't until Feb 28, but February is Rare Disease Awareness Month!

This is the fourth Rare Disease Awareness Month I've been ✨open✨ about the muscle disability I was born with, Central Core Disease.

Even though I was born with it, I wasn't diagnosed until I was 20. Growing up, I had no language to understand it, nothing to look up to learn about it, and no terms to search to find other people with it. I didn't know it was a rare disorder, or that there was a rare disease community at all.

Since 2024, I've been participating in the Rare Disease Day #LightUpForRare campaign, requesting buildings and monuments to light up in recognition of Rare Disease Day, with the support of the Canadian Organization for Rare Disorders.

This year so far, I've gotten 24 locations across 16 Canadian cities and 4 provinces approving my requests to light up in recognition, the most places and cities I've had so far, including my first lighting in British Columbia! 🙌🏽

Rare Disease Day and Rare Disease Awareness Month are about creating visibility and community for the 1 in 12 Canadians living with a rare disorder.

Living with your own rare disease can feel like a pretty niche experience. Connecting with others, even with different disorders than your own, is a reminder that a community that understands is out there. 🩷🩵💜💚