The Rare Disease Connection
In honor of RARE Disease Day on February 29th, CorDynamics was looking for a way to contribute, participate and make a difference.
Little did I know the ideal opportunity was right in my backyard. I would learn that I was connected to it in more ways than one.
Connection 1: My youngest son came home from school excited about “Dollar Denim Days” in honor of RARE Disease Day and in support of the Global Genes Project. The Spencer Loomis Elementary students would make and purchase denim ribbons as well as wear their favorite pair of jeans to school.
Connection 2: Two Hearts Rock, the non-profit organization we collaborated with in July for The Beat Batten & Rock Rare Disease concert given by Jesse Malin, was orchestrating the Dollar Denim Days event.
Connection 3: The proceeds would go toward research on Rett Syndrome, a rare genetic disorder of the nervous system and the devastating diagnosis given to Amelia “Emmy” Foster, the 3-year-old daughter of Colleen Foster, who was a former teacher kindergarten teacher at the school. My oldest son had been one of Mrs. Foster’s students.
Connection 4: Upon further investigation, I learned Rett Syndrome robs children of their verbal and motor skills and is often associated with a dangerous heart condition that CorDynamics regularly researches—long QT syndrome.
Connection 5: CorDynamics jumped on board and pledged to match the funds raised by Spencer Loomis Elementary students in their Dollar Denim Days fundraiser next week.
With millions of Americans suffering from rare diseases, these connections are everywhere—perhaps in your backyard too.
Make the most of February’s bonus day on the 29th…get connected to Rare Disease Day.
Theresa Gralinski, Marketing Director
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