There’s something called the Miracle Window, and although it sounds like some kind of wonderland, it has foreboding margins. For Sophie Feder Rosenberg, the soon-to-be three-year-old daughter of chef Hosea Rosenberg and his wife Lauren Feder Rosenberg, their personal Miracle Window marks the brief timeframe during which Sophie’s symptoms for multicentric carpotarsal osteolysis (MCTO), an extremely rare and painful genetic disorder, are relatively manageable.
Only 30 people in the world are known to suffer from this syndrome, a degenerative skeletal disease that, in essence, eats away at the intricate carpal (wrist) and tarsal (ankle) bones of the body while also causing kidney failure. As the disease progresses, Sophie will become crippled in her hands, feet, and potentially other joints, and most likely need a kidney transplant at some point during her childhood.
Lauren and Hosea, who won Bravo’s Top Chef season 5 and is the chef-owner of Blackbelly and Santo in Boulder, knew something was wrong early on in Sophie’s life. When most children start walking, Sophie resisted. When she was 18 months old, her tentative steps brought grimaces of pain. The couple sought medical help and received a diagnosis of juvenile arthritis. It was a blow, but with braces, therapy, and medications, Sophie made progress. It wasn’t until many months later that genetic testing revealed the presence of MCTO.
That devastating diagnosis came in mid-March—the very same week restaurants, including Blackbelly and Santo, were closed to in-person dining due to COVID-19. “We went into some deep, dark holes,” says Hosea. The couple reached out to Shriners Hospital in St. Louis, one of the few hospitals with experience working with MCTO patients. Sophie’s appointment was scheduled for early May, but due to COVID-19, it’s been moved to August. “The process is already disheartening,” Lauren says. “The doctors have said ‘Don’t come with high hopes.’ There’s not a lot of people, so [MTCO] is not a focus and there’s no major benefit to create a treatment.”
But for Hosea, Lauren, and Sophie, that is simply unacceptable; they’re taking matters into their own hands. “We need to stop this in its tracks before it advances,” Lauren says. While also trying to keep their restaurants in business, the couple has dedicated every waking moment to launching a foundation, Sophie’s Neighborhood.
Julia Vitarello, who created the wildly successful Mila’s Miracle Foundation to find a treatment for her daughter, who suffers from Batten Disease, is standing alongside Hosea and Lauren to help guide the process. Based on Vitarello’s guidance and the feedback the couple received from the scientists she put them in touch with, their goal is to raise $2 million in 2020 to get an experimental treatment under way. “It’s all about money, and although we don’t usually like to ask for help, we’ll use whatever connections and resources we have to get this done for Sophie,” Lauren says.
On May 30, Sophie’s third birthday, the foundation will hold its inaugural fundraiser. Due to the state of the world in the midst of a pandemic, the event will take the form of a virtual silent auction. But Hosea and Lauren are excited that event has no bounds. “It doesn’t matter where you are. All you need to do is turn your computer on,” Hosea says. The auction will kick off at 12:01 a.m. on Saturday, May 30 and end at 9 p.m. that night.
As you might imagine, a Top Chef winner and a pillar of the Boulder culinary community has far-reaching connections: The silent auction lineup is proof. Some of the national and local highlights include:
• a 30-minute video call (plus a signed copy of Bringing It Home: Favorite Recipes from a Life of Adventurous Eating) with Top Chef host Gail Simmons
• a 15-minute video chat and premium autograph from Super Bowl Champion and New Orleans Saints Pro Bowl Wide Receiver Emmanuel Sanders
• a virtual chat or bass lesson from Bob Crawford of the Avett Brothers
• a virtual guitar lesson by acclaimed musician Jake Cinninger of Umphrey’s McGee
• one-on-one virtual cooking classes by Top Chef contestants; i.e. homemade pasta with chef Joe Sasto (other contestants offering classes for auction include Hosea, Fabio Viviani, Michael Voltaggio, Lee Anne Wong, Angelo Sosa, Denver’s own Carrie Baird, Casey Thompson, and many more)
• a weekend of glamping and guided mountain biking in Pigs Forest, North Carolina for up to six people (no expiration)
• a never-before-shared kolache recipe and video lesson from Caroline Glover of Annette
• a private happy hour with Cocktail Caravan’s mobile bar (Denver/Boulder only)
A full preview of the auction can be viewed here; more items will be added on a rolling basis until May 30. In addition to signing up via that link, you can also access the auction via mobile by texting “Sophie” to 243-275. Of course, donations can also be made directly to the foundation’s website.
Bonus: Not surprisingly, the tight-knit local restaurant community is rallying around Sophie in myriad ways outside of the auction. On May 30, Fruition and Mercantile Dining & Provision will donate 10 percent of carryout dinner sales to Sophie’s Neighborhood; Kevin Morrison of Tacos Tequila Whiskey is funneling all proceeds from the restaurant’s annual liquor locker rentals to the foundation; Gelato Boy has created an ice cream flavor (Berries & Graham) in Sophie’s honor with proceeds going to the foundation; and Fortuna Chocolate crafted a custom flavor for Comino Food Stories with 50 percent of sales going to Sophie’s Neighborhood.