Lauren Rosenberg and her husband Hosea, who own Blackbelly & Santo, a local restaurant in Boulder, Colorado, founded Sophie’s Neighborhood, a nonprofit 501c3 organization. Their inspiration came from their five-year-old daughter, Sophie Rosenberg, who was diagnosed with an ultra-rare, genetic disorder called Multicentric Carpotarsal Osteolysis (MCTO).
This disease affects approximately 50 people worldwide, causing progressive crippling genetic bone and kidney damage, which threatens end-stage kidney failure. Unfortunately, there is currently no cure for MCTO, and the disorder has caused Sophie’s joint bones to disappear and develop abnormally over time.
Sophie’s Neighborhood was established to rapidly fund scientific research worldwide, with the guidance of an expert team of scientific advisors, to understand exactly how a single, heterozygous MafB mutation causes MCTO. Lauren and her team are collaborating with scientists from academic institutions and biotech companies to explore various disciplines related to MCTO pathology, from understanding the biology of bone building cells to developing viable therapeutics through drug repurposing and novel modalities to halt MCTO’s progression in patients. The ultimate goal of Sophie’s Neighborhood is to Move Mountains for MCTO and to help patients with this rare disease.