For Rebecca Woroniecki, what began as a way to raise awareness of her daughter's rare genetic disorder has grown into an annual event bringing the community together to support children like her.
The second annual Laps with Lizzie Community Walk will return to the Long Beach Boardwalk on Saturday, Oct. 24, raising money for Aicardi-Goutières syndrome (AGS) research at Children's Hospital of Philadelphia.
The event honors Woroniecki's 4-year-old daughter, Lizzie, who was diagnosed with the rare disorder.
Woroniecki, of South Bellmore, said she initially struggled to share her daughter's diagnosis publicly. On Lizzie's second birthday, she opened up about the condition on social media and launched an online fundraiser that collected nearly $30,000.
Encouraged by the response, she organized a walk the following year, giving supporters an opportunity to come together in person.
The inaugural walk in 2025 drew more than 100 participants and raised over $40,000, bringing the combined fundraising total to nearly $70,000.
Woroniecki recalled becoming emotional as she addressed the crowd before the walk.
“I just looked around the crowd and just saw everybody, and I just started to cry because it was just emotional to see how much support we really have,” she said.
The turnout inspired her to make Laps with Lizzie an annual tradition.
This year's fundraiser is already building momentum. As of Oct. 20, approximately 115 participants had registered, and about $33,000 had been raised ahead of the event.
Woroniecki hopes to reach a cumulative fundraising milestone of $100,000 over three years, with proceeds supporting research at Children's Hospital of Philadelphia, where Lizzie receives care.
Research initiatives include advancements in newborn screening and the development of biomarkers for AGS, which could help improve the understanding and treatment of the disorder.
Beyond fundraising, Woroniecki hopes the event will raise awareness of the challenges children with AGS face.
Since last year's walk, Lizzie has made progress of her own. After undergoing hip surgery in March, she has been doing well, her mother said.
She participates in adaptive horseback riding every Saturday at HorseAbility in Westbury and enjoyed a surfing experience with Surf for All in Long Beach over the summer.
“She's been doing great, and she's progressing in her own ways,” Woroniecki said.
She described Lizzie as a strong, determined and resilient girl who approaches challenges with a smile.
This year's walk will feature an expanded selection of raffles, with prizes donated by local businesses, including Crafty Hands in Merrick, All American Gymnastics, Bagel Boss, Frankie's Pizzeria, Temptations, Carefree Tennis and Mixology America.
Grand prizes include Mets tickets and a foursome of golf at Colonial Springs in Farmingdale.
Children can also enjoy face painting and glitter tattoos provided by A Dream Is a Wish Parties LLC. The activities are among the new additions to this year's event, offering families more opportunities to enjoy the day together while supporting the cause.
For Woroniecki, the growing participation and support reflect the community's commitment to helping children affected by AGS and advancing research toward better treatments and, ultimately, a cure.
Check-in begins at 9:15 a.m. at the Long Beach Boardwalk, with the walk starting at 10. Participants will begin and finish at Laurelton Boulevard.
To register, donate or learn more about Lizzie's story, visit chop.donordrive.com/lapswithlizzie2026. Questions can be directed to lapswithlizzie@gmail.com.
