POMPTON PLAINS, NJ — On May 18, children battling Diffuse Intrinsic Pontine Glioma (DIPG), a terminal pediatric brain cancer with a devastating prognosis, were treated to a day designed entirely around joy, imagination, and celebration at Legacy Castle in Pompton Plains, New Jersey.
Hosted in partnership with the Glimmer of Hope Foundation, the Tough2gether Foundation, and A Moment of Magic Foundation, the event was part of Glimmer of Hope’s “Best Day Ever” program, created in 2021 by founder and former Miss Rhode Island Ali Hornung.
The initiative travels to castles and luxury venues across the country, transforming spaces into immersive princess experiences complete with gowns, styling, photography, entertainment, and moments designed to make children feel celebrated and seen.
This special edition of Best Day Ever welcomed five children diagnosed with DIPG for a private experience tailored specifically to families navigating one of pediatric cancer’s most devastating diagnoses.
“This program was created to give children a moment where they can simply feel magical,” said Hornung. “For families carrying so much uncertainty and heartbreak, even one day filled with joy, confidence, and excitement can mean everything.”
The event built on a growing series of Best Day Ever experiences held across the Northeast, where families have described the program as transformational during some of the darkest periods of treatment.
One mother shared that after her daughter’s leukemia diagnosis, life became consumed by hospital stays, treatment, and isolation. During Best Day Ever, she said her daughter “forgot about the hospital visits, treatments, and homeschooling, and simply felt alive and loved.”
Another family described the experience at Oheka Castle in New York as “magical,” recalling the excitement of gowns, makeup, princess styling, and the chance for their daughter to smile again after months spent in the hospital.
For one young girl undergoing leukemia treatment, losing her hair became one of the hardest parts of her diagnosis. During a Best Day Ever event, Hornung presented her with a bald doll that looked just like her. According to her mother, the moment changed everything.
“Right away she took off the wig and had so much confidence being a bald princess,” she shared. “Since that day, she’s embraced how she looks and now she loves her bald head.”
Throughout the event, children participated in a royal-style photo shoot led by volunteer photographer Amanda Bullock, alongside princess-inspired experiences created with volunteers and community partners.
DIPG and DMG are aggressive, terminal pediatric brain tumors with extremely limited treatment options and devastating survival rates. Brain cancer remains the leading cause of cancer-related death in children by disease. Families facing these diagnoses are often forced to travel across the country for experimental treatment options while balancing overwhelming emotional and financial burdens.
DIPG continues to be a universally fatal pediatric brain tumor, with an average life expectancy of approximately nine months from diagnosis. However, a clinical trial involving the DNX-2401 oncolytic virus in Spain has shown some of the most promising outcomes seen to date, including median survival times that have significantly exceeded historical expectations.
The trial has recently expanded into the United States, offering renewed hope to families facing this devastating disease. Yet despite the promise of this research, the financial burden of operating and manufacturing the therapy has placed immense strain on the small biotechnology company working to keep the trial alive.
One of the children attending the event was the first pediatric patient in the United States to receive the DNX-2401 virus directly into the brainstem, where it is designed to target and destroy tumor cells woven throughout the brain. Her family reported that she is doing remarkably well, offering hope to many others navigating this diagnosis.
The event also helped support efforts to fund a biomanufacturer responsible for developing a drug connected to a clinical trial that families and researchers believe holds meaningful promise for children battling these tumors. Continued funding remains critical to keeping the treatment pathway alive for current and future patients.
“As a community, we are committed to raising awareness and supporting efforts to sustain the DNX-2401 clinical trial and the groundbreaking work being done to create meaningful treatment options and improved quality of life for children with DIPG and DMG,” organizers shared.
While the day centered on celebration and community, organizers also hoped to raise awareness for the urgent need for pediatric brain cancer research funding and continued development of promising therapies currently in clinical trials.
Participating children at the Legacy Castle event included families connected to:
About the Glimmer of Hope Foundation
Founded by former Miss Rhode Island Ali Hornung, Glimmer of Hope Foundation supports children and families navigating pediatric cancer through advocacy, resources, and meaningful experiences designed to bring comfort, confidence, and joy during treatment. The organization provides bald dolls to children undergoing treatment, hosts its annual Glimmer Gala, organizes Best Day Ever princess experiences across the country, and created Hope Has No Hair, a children’s book written by Hornung and inspired by the true story of a young girl’s battle with leukemia.
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