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Feb. 27, 2025- Rare Disease Day is a , hosted annually on the last day in February, aimed at raising awareness among the general public and decision makers about rare diseases and their impact on patients' lives.

Toms River Regional ÀÖÓãÌåÓýs has honored the day in years past, but in 2025, it has taken on new meaning.

In of last year, Leigha Cirillo passed away. The 15-year-old "warrior-princess of Toms River" battled a rare chromosonal condition called 3p deletion syndrome, and her resilience in the face of her disease was an inspiration to so many people. Without Leigha, in fact, Rare Disease Day would not be what it's grown to become here in New Jersey.

"We visited Trenton in 2015 on behalf of Leigha's Hope, as it was known at the time, for a seminar and to speak to Senators about our cause," said Erica Cirillo, Leigha's mom and relentless advocate. "We let them know why rare diseases like Leigha's are so important, and how awareness can help fund research and connect families. The governor signed a proclamation that day recognizing Rare Disease Day here in New Jersey."

Those last-day-of-February days in the years since have been spent on many Zoom calls—Leigha's sickness prevented the family from physically traveling to Washington, DC for in-person conversations—talking to representatives about what needed to change, and what asks could be made to affect policy for families battling rare diseases.

To say it's made a difference would be an understatement.

"These conversations are tough and can easily steer negative," Erica Cirillo said, "but I always told Leigha that she was going to do more, to not let what she can't do define her. Our work on these days and throughout the years has 100-percent connected us with families and organizations who are helping people live better, richer lives."

For the Cirillos, Rare Disease Days were also spent wearing purple—Leigha's preference with respect to her own personal battle with 3p deletion—as others honored the day wearing zebra print or jeans (genes), or even better, zebra-print or purple jeans.

"It's still her day. It always will be." -Erica Cirillo

Purple was the color of choice prior to this past year's rivalry football game between North and South, as Leigha was remembered before kickoff. A game traditionally known as the Civil War instead brought an entire community together under a new moniker: the Leigha Cirillo Memorial Game. Prior to that, at the Cirillos' home school of High ÀÖÓãÌåÓý East, on the emotional day of Leigha's passing, head football coach Kyle Sandberg immediately altered the planned neon theme to include purple, and the football team joined the East cheer squad to celebrate Leigha's life and dedicate the game to her memory.

Purple and jeans are in fashion again today, as schools throughout the district will honor Leigha by living out her legacy—celebrating Rare Disease Day.

There are plans, in the years to come, to advance awareness in Toms River ÀÖÓãÌåÓýs through assemblies and in-school activities on Rare Disease Day. But this year ... this one hits a little different for the Cirillos, and will be more understated than what's on tap for the future or the steady stream of Senator Zoom calls of prior years.

"We will go to the ocean, and do a little thing for Leigha," Erica Cirillo said. "We'll wear purple and invite others to join us, but this year will more of a memorial kind of thing.

"It's still her day. It always will be. It'll just be a little different."

Toms River Regional ÀÖÓãÌåÓýs is proud to carry the baton for 2025.

"This year we honor the memory of Leigha by recognizing Rare Disease Day in a clear, colorful, and hopefully impactful way," said Superintendent Mike Citta, who gladly imposed the fashion edict across the district. "Any awareness we can help raise for those like Leigha, fighting battles against the current of more well-known diseases, is important not only for this school community, but for all of humanity."

The Cirillos' advocacy non-profit grew to be known as Leigha Strong. It is still, appropriately, going strong. And as the family uses this Rare Disease Day to reflect and remember but with plans to ramp up in 2026 and beyond, some might say that Leigha Strong is only just getting started.