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.Â 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.Â This year, we were able to organize our February Dress Down Day to donate to the Undiagnosed DiseasesÂ 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. Â 450 students participated in wearing badges representing a specific rare disease community member and their rare disorder.Â The back of each badge listed some information about each rare disorder. Â In total we representedÂ 17 different rare disease communities.
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 awarenessÂ on behalf of this community.
Matt that is incredible! What a creative way to bring awareness. I’m sure it made a huge impact on both the students and the teachers. It probably even drove some dinner conversations after school too. Way to go!
Wow! Well done Matt, and what a great role model you are for our younger community. I hope my boys follow in your footsteps.
That’s awesome, Matt! So glad the day went so well – you did a great job! And thank you for sharing the story.
That’s no small amount of money you raised! Congratulations on the success of the venture, may it fuel your training. Training for your very first half marathon is a huge commitment. Make sure to fully enjoy it as you only get one first!
Hey Matt, great job!! And best of luck on your race!
Thank you everyone for the kind words. I feel so honored to be part of such a special community.