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:
- A Viking grill and virtual grilling Q&A with Hosea Rosenberg
- One-on-one virtual cooking class with James Beard Award–winning chef Alon Shaya of Safta; signed cookbook and Safta restaurant swag
- Virtual wine tasting with Master Sommelier and James Beard Award–winner Bobby Stuckey of Frasca Hospitality Group; a copy of Stuckey’s new cookbook, Friuli Food and Wine: Frasca Cooking from Northern Italy’s Mountains, Vineyards, and Seaside; plus a platter of cured meats by Cured Boulder
- Virtual Q&A with Todd Leopold, master distiller at Leopold Bros. Distillery or a private tour of the distillery; plus, a bottle of nine-year-old Tennessee-style Leopold Bros. whiskey from the distillery’s private collection
- Virtual pizza and cocktail party with chef Steven Redzikowski of Acorn, Oak at Fourteenth, and Corrida
- Virtual cocktail class with certified sommelier Bryan Dayton of Acorn, Oak at Fourteenth, and Corrida
- Virtual or in-person private cooking class for 10 people with chef Jordan Wallace of Pizzeria Locale
- A Maine Shack lobster bake for 12 people
- High-end brunch at home for 10 catered by Rosenberg’s Bagels and Delicatessen
- One-on-one virtual cooking class with Wiley Dufresne of Du’s Donuts & Coffee in New York City
- One-on-one virtual cooking classes with Top Chef contestants Jennifer Carroll and Fabio Viviani
Other ways to support the cause:
- Gelato Boy (Denver and Boulder locations) created a new flavor, Sophie’s Neighborhood Berries and Graham, made with the little girl’s favorite ingredients. For a limited time, proceeds from each pint sold online or in-store will support the organization.
- Dry Storage, a bakery and heirloom grain mill in Boulder, milled a special flour blend for Sophie’s Neighborhood, which can be purchased at Blackbelly (1606 Conestoga St., Boulder). All profits benefit the organization.
- Cookies4Cure, a nonprofit helmed by 10-year-old Boulderite Dana Perella, raises money to support research into rare pediatric diseases. The organization recently launched “Cookies4Sophie,” an advanced-order, pop-up bake sale that benefits Sophie’s Neighborhood. Visit sophiesneighborhood.org/fundraise for more details.