My Awareness Day at SJP

Team making badges

Hello my name is Matthew Maderia. This is my first year on the Running for Rare Diseases team and I am training for my first half marathon.

On Friday February 6, a few friends and I organized our second annual Rare Disease Awareness Day at St. John’s Prep High School.  This day was designed to raise awareness and this year money as well.

As a prep school, we must follow a strict dress code but once a month a “Dress Down Day” is held to raise money for a selected charity or organization. Students donate a few dollars and then dress in casual wear for the day.  This year, we were able to organize our February Dress Down Day to donate to the Undiagnosed Diseases Program at the National Institutes of Health (NIH) and the National Organization for Rare Disorders (NORD).

At the start of our day I had the opportunity to say a prayer over the announcements to better express the mission of our day and the importance of rare disease awareness.  450 students participated in wearing badges representing a specific rare disease community member and their rare disorder.  The back of each badge listed some information about each rare disorder.  In total we represented 17 different rare disease communities.

Students wearing badges

With the immense success of this year’s event, including raising ~$4,800, I am certain that this will become an annual tradition at St. John’s Prep, hopefully taking in a similar amount of money every year and spreading more and more awareness on behalf of this community.