In March of 2020, as the world plunged into chaos, Chef Hosea Rosenberg and his wife Lauren Feder Rosenberg were dealing with an independent crisis. Their daughter Sophie had just been diagnosed with multicentric carpotarsal osteolysis (MCTO) syndrome, a rare genetic disorder that causes progressive destruction of the carpal and tarsal bones. Up until that point, her parents and doctors had assumed Sophie was dealing with juvenile arthritis. Then just over a year old, Sophie had shown signs of difficulty standing up and walking, and was clearly suffering when she tried to get mobile.
In an effort to figure out what was at play, the Rosenbergs turned to whole genome sequencing, where doctors assessed all 20,000 genes in order to figure out the root cause of her pain. The diagnosis of MCTO placed Sophie among 30 to 60 other individuals worldwide who were coping with the same condition.
Chef Hosea owns and operates Blackbelly and Santo, and Lauren acts as the director of marketing. Both have been community fixtures for their commitment to sustainable and ethical sourcing, outreach and civic involvement. In 2022, Blackbelly was awarded the Slow Food Snail of Approval, signifying the company’s commitment to the environment and local purveyors while espousing the values of antiracism and anti-oppression.
When the Rosenbergs got the news about Sophie’s condition, they sprang into action.
“All these crazy things were happening — it felt so out of control,” Lauren says. “Our reaction was, ‘No! We’re gonna do something about this.’”
Exactly one month later, the pair had established Sophie’s Neighborhood, “a nonprofit dedicated to fundraising for research into the development of an effective treatment or cure” for MCTO.
In the years that have followed, Lauren, who acts as president of Sophie’s Neighborhood, has established a scientific advisory board with professionals from the fields of biotech, genetics and academia. The group conducts monthly meetings where they discuss advancements in cell model systems, drug screening and other lab research.
On Tuesday, July 11, the Rosenbergs will host A Rare Dinner, featuring an absolute powerhouse ensemble of some of the best culinary talent on the Front Range. The nine-course meal will be served in Blackbelly’s recently-revamped private dining room. All but a few of the 32 seats are already sold out, though at the time of this article’s writing, there are still tickets available for $325 each. All proceeds from the dinner will be directed to Sophie’s Neighborhood.
Over the course of three hours, the participating chefs will all present dishes responding to the question “what does rare mean to you?” The cast includes Rioja’s Jen Jasinski, Sheila Lucero of Jax Fish House, OAK at Fourteenth’s Steven Redzikowski, Tajahi Cooke of Ms Betty’s Cooking, The Fifth String’s Amos Watts, Theo Adley of Marigold and Glo Noodle House’s Ariana and Chris Tiegland. Steve Lewis of the Giuliana Wine Company will be providing libations.
“I will say that the coolest thing about Boulder and Denver chefs is how kind and giving everyone is,” says Lauren. “All these people already had offered their help,” so the local star-studded roster came together with ease. Many of the participants also donated to a silent auction that will be going on in tandem with the event. An online auction will be open to the public from midnight of July 10 until 9:15 p.m. on July 11, when the dinner will come to a close. Items include special dinners at Spuntino, Santo, Ultreia and Fruition alongside packages for days and nights out for four people in Boulder, Denver and Estes Park.
On top of the dinner, the fourth iteration of the annual Sophie’s Ice Cream Social will take place on July 16. Participating restaurants will serve dessert specials with correlating donations being sent to Sophie’s Neighborhood.
For those unable to attend these events, Sophie’s Neighborhood accepts donations year round.
