Sophie’s Neighborhood: Searching for a Multicentric Carpotarsal Osteolysis Cure

Chef Hosea Rosenberg shifts his focus from the kitchen to the cure in a fight for his daughter’s life.

Sophie Rosenberg
Photo courtesy of Lauren Rosenberg.

What do you do when your daughter is diagnosed with an ultra-rare, debilitating, progressive disorder with no known cure or treatment? When she is one of fewer than three dozen people globally sharing the same prognosis—and there’s nothing you can do to stop it from happening? If you’re Hosea and Lauren Rosenberg, you immediately start fighting to find solutions to save her.

“Honestly, this is my number one job right now,” says Hosea, whose other job titles include chef and restaurateur. The Top Chef season five winner owns and operates both Blackbelly and Santo, two celebrated restaurants in Boulder. However, he emphasizes, “Sophie is our only child, and she needs help. Her bones and kidneys are slowly failing, and she could end up in a wheelchair very soon. We just want to preserve her current functions. She already struggles with mobility, sees doctors and therapists every week, and wears braces on her feet and hands most of the time. We don’t want her body to deteriorate any further, so we’re working as hard as humanly possible to fix this.”

Within 72 hours of discovering Sophie suffered from Multicentric Carpotarsal Osteolysis (MCTO) Syndrome—rather than juvenile arthritis, as doctors initially believed—the Rosenbergs launched Sophie’s Neighborhood, a nonprofit dedicated to supporting research into developing an effective treatment or cure.

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“We do a ton of fundraising, and all the money goes toward research into MCTO,” says Hosea. “We are pushing hard to find a cure or treatment as quickly as possible. Time is our biggest enemy.”

The Rosenbergs have been “blown away” by the response they’ve received, particularly from the restaurant industry. “They support our fundraising efforts with donations from their own sales and raise awareness among their own audiences. They are helping us make a significant difference,” Lauren shares.

Cocktail Caravan created a specialty mixer featuring two of Sophie’s favorite flavors, strawberries and raspberries, and Gelato Boy scoops Sophie’s Neighborhood Berries + Graham pints, with all proceeds going to the cause. And that’s just the tip of the supportive iceberg. “We have seen the best in humanity,” says Lauren. “Receiving kindness from so many people and knowing how many care about Sophie brightens the world a bit for us.”