My family and I have benefited from being part of a rare disease community known as Congenital Hyperinsulinism International (CHI), which is part of a larger support network within the National Organization for Rare Disorders (NORD).  While I now can embrace being “Rare” it hasn’t always been easy, and for this reason, I wanted to center my senior project around educating and fundraising for our Rare Disease Organizations.  The Rare Disease Trivia Night is open to all ages and teams will consist of 6 people, with a charge of $120.00 per team.  All proceeds from this event will be equally divided between CHI and NORD.  In addition to Trivia, I have invited local families who are part of NORD to come and speak about their journies through learning and treating a rare disease. The goal is to raise funds while raising awareness of different rare diseases.  

If you come early you can listen to Marcy and Ian Kelly from SUGAR while you read about various Rare Diseases, NORD and CHI.