Boulder Burgundy Festival and festival founder Brett Zimmerman welcome Sophie’s Neighborhood, a nonprofit dedicated to fundraising for research into the development of an effective treatment or cure for an ultra rare genetic disorder: Multicentric Carpotarsal Osteolysis (MCTO).
Sophie’s Neighborhood is a nonprofit organization founded in response to Sophie Feder Rosenberg’s diagnosis of Multicentric Carpotarsal Osteolysis (MCTO) Syndrome. Sophie was misdiagnosed with Juvenile Idiopathic Arthritis for a year until the correct diagnosis was discovered through Whole Exome Sequencing, one of the most extensive genetic tests available.
In a matter of a moment, our understanding of Sophie’s condition went from being within a large subset of children with a very treatable disorder – arthritis – to suddenly being one in 30 with a crippling, life-altering disease that has no treatment or cure.
Image via the Sophie’s Neighborhood Facebook.