The Rockville Centre Police Benevolent Association is organizing a community fundraiser next month to support the infant daughter of a village police officer who is battling a rare and devastating neurological disease.
The Madeline’s Mission Spring Fest will raise money for 1-year-old Madeline Norton, the daughter of Officer Gerard Norton, 32, and his wife, Kaitlin, 30. Madeline was diagnosed at just 6 months of age with pantothenate kinase-associated neurodegeneration, or PKAN, an extremely rare genetic disorder that affects fewer than one in a million children.
The Spring Fest will take place April 11, at the St. Agnes Parish Center, and will feature local breweries, restaurants and family-friendly activities in an effort to raise money for research.
Officer Mike Rollo, president of the Rockville Centre Police Benevolent Association, said the event is meant to rally the community around Norton and his family during an extraordinarily difficult time.
“Anything one goes through, we all go through together,” Rollo said. “To meet Gerard is to know an amazing guy, and for him to go through this alone would be terrible. We just want to be there to support him and make sure he has a comfortable way of dealing with this unfortunate disease.”
Proceeds from the event will support research through the Loving Loic Foundation, an organization based in Bozeman, MT., that is working to advance treatments and potential clinical trials for PKAN.
“By raising awareness and funds for PKAN, we hope to bring attention to this rare disease and move research forward so families like ours have hope for the future,” Kaitlin Norton said.
The Spring Fest will have activities for those of all ages, including a petting zoo, live music and raffles. The Nortons hope it will help raise awareness of the challenges families face after receiving a diagnosis.
“You don’t realize that something like this could happen to you until it does,” Gerard said. “It’s one of those things where we just want to spread awareness and get more research for prenatal testing.”
The Rockville Centre Police Department has already organized other fundraising efforts, including a golf outing last July. Rollo said that officers throughout the department are committed to helping the Nortons, and emphasized the importance of community support.
“When he told me about his daughter’s condition, I felt that we had to put forth an effort somehow to make dealing with this issue easier for his family,” Rollo said. “We just started working on ways to do that.”
Since their daughter’s diagnosis, the Nortons’ mission has expanded as support has spread across Long Island and beyond. “Long Island is literally incredible,” Gerard said. “The cure for Madeline is here on this island. We’ve made such great progress, and we’re really excited to see what the future holds. It’s very hopeful.”
Following the PBA’s golf outing last July, Madeline’s Mission fundraisers have also taken place in Amityville, Centereach, Mastic Beach and the family’s hometown of Massapequa.
“We’re in awe of the community,” Gerard said, “and everything has just been so good.”
The Nortons created Madeline’s Mission with the goal of raising collectively $5 million to fund vital medical research and clear the path for clinical trials. Today, the campaign is $1.3 million away from reaching that goal, in partnership with the Loving Loic Foundation.
“That’s not just us — that’s all the PKAN families across America,” Gerard said. “But we’re really moving the needle, and we’re going to get a cure for this little girl and all the other PKAN kids.”
PKAN is a progressive neurological condition that gradually takes away motor function, speech and, eventually, the ability to walk, eat and live independently.
“We’re really looking forward to meeting more people from the community,” Gerard said. “We’re excited for the weather, the community and everyone working together to find a cure — not just for Madeline, but for all the PKAN kids.”
Tickets for the Spring Fest are $75, and are available at fundthefirst.com/campaign/madelines-mission-spring-fest-h341lk.
For more information about Madeline’s Mission, visit the organization’s Instagram page, @Madelines.Mission.
