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Sophie Rosenberg. Photo by Lauren Feder Rosenberg

Help Hosea and Lauren Rosenberg Fight Their Daughter’s Rare Disease

Sophie’s Neighborhood is hosting a second virtual auction on August 15 to support research for MCTO, the rare skeletal disorder afflicting three-year-old Sophie.

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Lauren Feder Rosenberg and her husband, Top Chef–winner Hosea Rosenberg, haven’t slept well since March. That’s when the couple learned that their young daughter Sophie suffers from multicentric carpotarsal osteolysis (MCTO), a very rare, degenerative skeletal disease that, over time, will destroy the bones in Sophie’s wrists and ankles and likely lead to kidney failure. Only 30 people in the world are known to have MCTO.

Since then, the Rosenbergs, who own Blackbelly and Santo in Boulder, have been hard at work establishing and raising funds for Sophie’s Neighborhood, a nonprofit dedicated to research and treatment development for MCTO. To date, they’ve rallied the support of top chefs and restaurateurs across the country; assembled a scientific advisory board of experts; and raised approximately $300,000 for the cause. Still, they’re far from their $2 million goal, and in an effort to close that gap, Sophie’s Neighborhood is hosting a second virtual auction on Saturday, August 15. The first auction, held on Sophie’s third birthday in May, attracted about 1,200 bidders and raised $120,000 in one day, according to Lauren.  

Funds generated from that event are already being used to kickstart important research. Sophie’s Neighborhood is working with Dr. Nina Ma, an endocrinologist at Children’s Hospital Colorado, to initiate development of a database that tracks the trajectory of MCTO in patients diagnosed with the disease, says Lauren. This will serve as a resource for understanding the disease better and will also be crucial for future drug development. The organization is also securing grants that will allow Andreas Zankle, a researcher at the Garvan Institute of Medical Research in Sydney, Australia, to more deeply study a mouse model for MCTO, which will help scientists understand the disorder’s underlying mechanism. 

Right now, Sophie is doing “pretty well,” Lauren says. The family is in what they call a “miracle window of time,” where they have a diagnosis, but the toddler’s symptoms are fairly minor—she is still able to walk, run, and color with crayons. But if Sophie’s disease progresses, she likely won’t be able to enjoy these simple activities, which is why “we’re trying to do as much work as urgently as possible to learn about the disorder…before things get worse,” Lauren says. 

The goal, Hosea said in a new Vimeo video about Sophie’s Neighborhood, isn’t just to cure their daughter. “This is to find a treatment for this disorder for everyone that has it and will have it in the future,” he says. “And it’s possible this research will shed light on other rare disorders.” 

The August 15 auction, which opens at 12:01 a.m. and closes at 9 p.m., will feature about 90 fantastic offerings, including many experiences and products from Denver-area chefs, artisans, and makers. You can preview the auction by visiting bidpal.net/sophie, or by texting “Sophie” to 243-725 and clicking on the returned link. More items will be added on a rolling basis. 

Highlights from local and national contributors include:

Other ways to support the cause: 

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