Now in its second year, the Newtown Haunted Hustle 5K has quickly become a beloved community event that combines festive fun with meaningful fundraising. Founded by Newtown resident and race director Jen Nicholl, the Haunted Hustle benefits the NR2F1 Foundation, a nonprofit dedicated to supporting individuals and families affected by an ultra-rare genetic disorder known as Bosch-Boonstra-Schaaf Optic Atrophy Syndrome (BBSOAS).
For Nicholl, the cause is deeply personal. Her 14-year-old daughter, Maggie, was diagnosed with a rare NR2F1 gene variant that causes developmental challenges and symptoms similar to autism. “It’s a rare variant of the NR2F1 gene,” Nicholl explained. “It looks like autism and intellectual disabilities, but because it’s so rare, it’s considered ultra-rare. Less than 500 people internationally have this diagnosis.”
The NR2F1 Foundation, a 501(c)(3) nonprofit organization, works to empower families through education, advocacy, and research. As a member of the foundation’s board of directors, Nicholl helps guide patient-driven research by collaborating directly with scientists studying the gene. “We’re in a rare spot of telling researchers what we want them to fund,” she said. “Because it’s so rare, we as families are helping shape the research that could one day help our children.”
Nicholl and her husband have lived in Newtown for 16 years and raised their three children in the Council Rock School District. With deep community roots, she wanted to create something that combined her passion for helping others with Newtown’s strong sense of togetherness.
“I’m fairly involved in the Newtown community and I’m always trying to think outside the box of ways to raise money for the foundation,” she said. “Newtown does holidays so well, especially Halloween. We have the window painting, the parade, Movies in the Park with Halloween movies. So, I thought, why not add a Halloween-themed 5K? People love to dress up and go to an event.”
The idea took off quickly. The inaugural Haunted Hustle in 2024 drew 331 participants, far exceeding her goal of 100 runners. This year’s race saw an even larger turnout, with nearly 430 registrants filling the streets of Newtown in their best spooky gear.
The 5K course began and ended at the Chancellor Building on North Chancellor Street, weaving through the historic borough. Participants ranged in age from infants in strollers to runners in their 80s. “We had a really large span of ages,” Nicholl said. “About 25% were under 18, but adults love Halloween just as much as kids!”
Runners received Haunted Hustle T-shirts emblazoned with a bright orange skeleton design, a glow in the dark finisher medal, and many came in full costume. Awards were given for top male, female, and youth runners, along with prizes for the scariest, funniest, most creative, and best group costumes. “The Grim Reaper was a great costume this year,” Nicholl said with a laugh. “And my husband dressed up as Frankenstein—on stilts! He’s about 6’, so he was about nine feet tall walking around like Frankenstein.”
After the race, participants gathered at Second Sin Brewing Company on State Street for a post-race celebration. Each runner received a drink ticket, and the brewery donated 10% of proceeds from the festivities to the NR2F1 Foundation.
Between registrations, donations, and sponsorships, this year’s Haunted Hustle is expected to raise nearly $50,000, an increase from the $40,000 raised in its inaugural year. “Once costs are deducted, I believe we’ll hit around $50,000,” Nicholl said. “The generosity from this community is just incredible.”
One of the most meaningful parts of this year’s race was the presence of eight children affected by NR2F1 disorders who traveled from different states to attend. The race coincided with a nearby scientific research conference hosted by the NR2F1 Foundation, allowing families and board members to participate. “To have eight of these kids here was really powerful,” Nicholl said. “It was wonderful for our community to see not only this fun day but also the children they’re helping.”
Among those families was the McNeely family, who have two daughters with the same disorder as Maggie. “The McNeely family came last year and this year,” Nicholl said. “They brought about 50 family members last year and closer to 60 this year, traveling from all over the state. I’m constantly impressed by their support.”
For Nicholl, the Haunted Hustle represents more than a fundraiser; it’s a symbol of how a caring community can rally behind a family and a cause. “I feel so blessed to live in this community,” she said. “The people I’ve met and the friends I’ve made feel like family. So many people pitch in, not just because they love running or Halloween, but because they love Maggie. Supporting the NR2F1 Foundation means supporting her and other kids like her.”
The NR2F1 Foundation funds crucial research into Bosch-Boonstra-Schaaf Optic Atrophy Syndrome (BBSOAS), which affects development, vision, and neurological function. Many individuals with the disorder experience autistic-like traits, intellectual disabilities, cortical visual impairment, and seizures. Because it is so rare, patient-driven fundraising efforts like the Haunted Hustle play an essential role in advancing scientific understanding.
“We do a lot of Zoom meetings with our board,” Nicholl said. “Our president is in Texas, and the researchers we work with are mostly abroad. It’s an international effort, but the heart of it is families like ours, coming together to make a difference.”
Looking ahead, Nicholl hopes to make the Haunted Hustle a permanent fixture in Newtown’s fall calendar. “Our hope is to continue this as an annual event and keep growing it,” she said. “We’re getting such great feedback and are already thinking about ideas for next year. We just want to add to the whole festive, spooky season in Newtown.”
For more information or to support the cause, visit NR2F1.org.
