Nearly 130 runners, walkers, wheelchair users and families filled Clemyjontri Park on Sunday, Sept. 13, for the Lilly and Blair Foundation's third annual 5K Run, Roll and Stroll.

The event raised awareness and funds for research into childhood-onset SPG4, a rare neurological disease that causes progressive paralysis in children. Most affected children lose the ability to walk between ages 5 and 10, according to the foundation's website. No approved treatment exists to stop or reverse the disease.

The foundation was started by two Northern Virginia families after their daughters were diagnosed within weeks of each other in July 2021, according to the foundation. Lilly Gregg, now 7, primarily crawls at home and uses a walker at school. Blair Lorek, now 8, has never walked independently and uses a wheelchair as her main source of mobility. The genetic variant they carry has been identified in only about 22 children worldwide, the foundation said.

Katie and Michael Gregg and Chris and Stephanie Lorek, who serve on the foundation's board, organized the nonprofit in January 2023 and received tax-exempt status that September.

The Sept. 13 event at the Georgetown Pike park featured a timed 5K, a Kids' Dash, family activities and access to Clemyjontri's accessible playground. The foundation's tagline for the race: some run, some roll, some stroll, everyone belongs.

Since its founding, the organization has raised more than $1.2 million, as reported by the Fairfax Times. The first 5K in May 2024 raised nearly $5,000. The second, in October 2025, brought in more than $5,500. The foundation describes itself as the only nonprofit solely focused on childhood-onset, de novo SPG4.

That money is reaching labs. In July, the foundation awarded $300,000 through its first Strategic Research Grant Program to two projects: a gene therapy study at UMass Chan Medical School led by Miguel Sena-Esteves and a drug repurposing effort at Drexel University College of Medicine led by Liang Oscar Qiang. Each received $150,000 over two years.

Clemyjontri Park, a Fairfax County Park Authority playground at 6317 Georgetown Pike designed so children of all abilities can play together, hosted the event.

The foundation's next fundraiser is its 2026 Winter Benefit on Friday, Nov. 13, at Birkby House in Leesburg, according to the foundation.