Stories

Dear NBIA Behind the Scenes

October 1, 2024

During our Health Equity Forum at Week in RARE 2024, Suzanne Edison led a great workshop for writing a letter to your rare disease and crafting a mask that shows the super powers you have to deal with that disease.

Amber Denton wrote this piece and created this mask.

A purple paper cut out mask, with a red lip and a yellow top hat.

Behind the Scenes (a mask).

Dear NBIA,

You are like a fly always around. Only being a pest when you are right in my face, seeming to never leave. To me, you are like walking through a field of cacti, full of thorns and things you don’t want to get near, scared to make a wrong move. But, looking around there tiny beautiful flowers of all shapes and sizes that seemed un phased at living such a thorny life. You sound like a high school marching band with many different sounds but one melody. You are a trail mix that is filled with many different experiences, emotions, and situations. Navigating the community is like walking through the perfume section of a department store, overwhelming but also intertwined with spots of enjoyment. If I could call you by any other name it would be Monet. Individually it is difficult and often confusing, but together with a community creates a source of beauty.

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