On Saturday, March 2, a local dance studio, Dance Arts Center (DAC), hosted a benefit performance supporting the local nonprofit Believe in a Cure (BIAC).
Close to 400 people attended the benefit at the Landmark on Main Street to support BIAC’s mission of developing a treatment for the rare brain disorder FOXG1 syndrome.
BIAC was formed in 2019 after Port Washington residents Ilissa and Scott Reich’s son, Eli, was diagnosed with FOXG1 syndrome. After learning of their son’s rare and severe brain disorder, Ilissa and Scott were facing a lot of unknowns, but what they did know was that they were going to do everything they could to help Eli and others diagnosed with FOXG1 syndrome.
“We were told that we were going to have a very different, difficult medical road ahead,” said Scott. “Eli is turning five next month, and he’s unable to walk or communicate in any fashion. He can’t do anything independently.”
FOXG1 syndrome is a rare condition that causes severe cognitive impairment, leading to developmental delays, seizures and other health issues. Scott explained, “All of this stems from the fact there’s a mutation in this tiny gene, but it’s a super important gene. The FOXG1 gene creates a protein called the FOXG1 protein. This protein is used to tell hundreds of other genes what to do. So when you have a problem in the FOXG1 gene, as my son Eli does, you don’t create the correct amount of the FOXG1 protein, and when the correct amount of protein is not created, it can’t give the correct instructions to all these other genes. And so when you have this tiny gene that has a problem, but the impact is enormous and very significant.”
After getting the diagnosis, the Reichs learned that there were no clinical trials, no drugs in development, and minimal research on FOXG1 syndrome available.
“We decided to change that,” said Scott. “And we started our nonprofit, Believe in a Cure.”
Ilissa and Scott have three children: Emelia, Eli and Dylan. Their first-grader, Emelia, dances at Dance Arts Center, where DAC owner Chelsea Farley decided to organize the dance benefit to help fund-raise for BIAC.
In a press release from BIAC, Farley said, “We call ourselves the ‘DAC Family,’ and my idea of family refers to the people who lift you up when you’re down and have your back through all of life’s twists and turns.”
To help raise funds for BIAC, Farley organized a show with seven different dance troupes within the DAC family and an adult fashion show with clothing made available by Port Washington brands Lexie and Change of Scenery.
“We’ve created that special DAC family bond with the Reich family over the past few years, so when I heard about Eli and the family’s story, I knew I wanted to help because that’s just what family does,” said Farley.
Emelia welcomed guests to big applause, noting: “My little brother, Dylan, and I think that Eli is very special, and we hope you do, too.”
Ilissa added, “Chelsea’s huge heart and generous sense of compassion are why we’re here tonight. Chelsea, this town is so lucky to have you.”
According to Scott, the dance benefit has raised over $25,000 so far. This money will fund and advance the research and clinical trials.
Before going public and asking for support from family and friends with BIAC, the Reichs wanted to form a solid roadmap for developing a drug for something like this. They started to get people involved who had experience in the medical field and could help them conceive a sensible strategy.
“The goal is how do we normalize FOXG1 protein expression? So the mutation causes the amount of protein to be low, so our drug programs are aimed at how we increase it back to a normal level, which the hope would be that by doing that, then the correct instructions go to all these other genes from the FOXG1 gene. And then he and others like him could have more fulfilling lives,” explained Scott. “There’s nothing wrong with [children diagnosed with FOXG1 syndrome] in terms of the physical. They may have other things that a lot of kids have. But the issue is that they’re not sending the signals to their body in the right way. But if the signals are sent the right way, there’s no reason to suggest that the bodies couldn’t do all the normal things.”
“So we’re doing all the cutting-edge stuff that you might read about if you take a dive into this space, including CRISPR, which is like gene editing therapy,” said Scott. “We have a repurposed drug that we’re trying to develop, meaning it’s used for something else, but we’re trying to repurpose it for the aims that I mentioned.”
Since starting BIAC in 2019, they have been fortunate enough to raise several million dollars to continue research and development. Scott said, “We have people that have made this fight their own, and through empathy, generosity and compassion, they continue to step up to support us.”
Scott shared some exciting BIAC news: “We have proof of concept for our gene therapy drug that it works in mice. So we’re now doing everything we can to accelerate our progress, which primarily is on the financial side because we know what we need to do scientifically.”
“But now we’re doing everything we can to advance this program to the clinic because the earlier in people’s lives that we can treat them, the better the potential outcome could be,” said Scott. “While the disease by itself is not fatal, the community did lose eight kids with this disease last year. So the complications that arise from the medical stuff, so the seizures and compromised immune systems, and so on, have led to tragedy. So, we’re doing everything we can. Our goal is to help Eli, but it’s not only to save him; it’s to save all of these kids that had this horrible condition just through an accident of nature, bad luck. And so we’re doing everything we can to try to change their trajectories.”
The Port Washington community continues to rally for the Reich family and BIAC. Scott said he couldn’t help but think that Port Washington should re-brand itself as “The Town That Loves You Back.”
“We try to pay it forward and be good citizens and community members, too,” said Scott. We feel that we’ve been the lucky recipients of so much compassion, kindness, and generosity from people in the town, and it’s just a special place.”
To show support and learn more about the BIAC, visit www.webelieveinacure.org
