These words resonated throughout the experiences of the two New Jersey families who were chosen to represent Epilepsy Services of New Jersey at the first Epilepsy Awareness Day at Walt Disney World which took place this April. Designed to be the East Coast’s largest gathering of epilepsy physicians, patients, and families, this magical 2-day experience left people with epilepsy and their families with memories that will last a lifetime and resources they can use in the moment, including epilepsy education, community connections and family support.
Born from a proven 12-year legacy of success, Epilepsy Awareness Day at Walt Disney World was a partnership between Sofie’s Journey,(the organization behind the renowned Epilepsy Awareness Day at Disneyland (EADDL) in California) and Epilepsy Alliance Florida. Epilepsy Alliance America and the Epilepsy Association also came together in support, with a shared goal of reaching families from coast to coast. The experience featured an educational expo center, a family celebration, and a “turn the park purple” day at Magic Kingdom. As part of their commitment to making this event accessible to families, ESNJ awarded 2 New Jersey families living with epilepsy with travel stipends to serve as NJ ambassadors.
New Jersey Families Represent ESNJ at Epilepsy Awareness Day at Walt Disney World
Naja and her family were one of the New Jersey families selected to serve as ESNJ ambassadors. As a long-time supporter of ESNJ’s work, Naja was familiar with ESNJ and was eager to be in a space where the epilepsy journey is understood without explanation. For her, attending Epilepsy Awareness Day at Walt Disney World represented the joy and magic of childhood that can too often feel out of reach for children with an epilepsy diagnosis, while also offering a chance to connect with a broader epilepsy support community:
“For me, being there is about showing my son that his journey matters, that his story has purpose, and that there is a whole community standing with him. Epilepsy Awareness Day at Disney is a reminder that even through challenges, there is still room for joy, connection, and hope.” – Naja
Katherine and her family also served as ESNJ ambassadors. Interested in expanding her advocacy efforts beyond her local school district, Katherine has been involved in the disability space through volunteer work and as a mother of a son with epilepsy. This experience gave her the opportunity to connect with other families living with epilepsy and epilepsy advocates, and organizations focused on epilepsy education and advocacy.
Both ambassador families and several ESNJ staff members participated by turning the park purple, exploring the expo, and building connections with other families living with epilepsy. They also found trusted resources they can bring back to their communities. Naja reflected that “Being able to stand not only as a mother of a child with epilepsy, but also as an advocate…gave me a sense of purpose and pride.”
The travel stipends allowed families to stay present, engaged, and comfortable while lessening the financial impact of an out-of-state trip.
ESNJ is grateful to our 2026 ambassador families and hopes to continue to sponsor families to attend epilepsy awareness events like Epilepsy Awareness Day at Walt Disney World in the future.
Bringing Epilepsy Education and Advocacy Back to New Jersey
As families return home and the Mickey ears come off, the magic of the experience remains strong. The community, support, and impact of this experience will stay with ESNJ ambassador families long after the memories fade. ESNJ is excited to welcome families to education and advocacy events in New Jersey, such as Paint the Pony Purple, Seize the Wave, Walk for the One, and National Caregivers Conference with the hope that we can bring just a little of that Disney magic back to the people we serve.
If you or a loved one is looking for epilepsy resources in New Jersey, seizure recognition and response training, or support for families living with epilepsy, please contact Epilepsy Services of New Jersey today.
About Epilepsy Services of New Jersey
Epilepsy Services of New Jersey (ESNJ), an affiliate of the Family Resource Network, is a statewide nonprofit organization that includes Autism Family Services of NJ, Caregivers of NJ, and Epilepsy Services of NJ. ESNJ offers a range of programs for families living with epilepsy, including employment services, respite care, summer camp, support groups, scholarships, and information and referral assistance. Additionally, ESNJ provides free educational presentations on topics affecting those with epilepsy and trains schools and communities on seizure recognition and response. To learn more, visit www.epilepsyservicesnj.org.
About Epilepsy Alliance America
Epilepsy Alliance America is a National Community, Building Local Solutions, for people impacted by epilepsy. Founded in 2018 by eight leading grassroots epilepsy organizations, the Alliance provides direct support services, information, education, advocacy, and public awareness efforts to approximately 3.4 Americans living with epilepsy. To learn more, visit www.epilepsyallianceamerica.org.
About the Author
Olivia Albanese Gordon is a public health professional with experience in education and nonprofit leadership. She currently serves as Director of Public Health Programs at Family Resource Network, supporting affiliates like Epilepsy Services of New Jersey. Olivia holds advanced degrees from Johns Hopkins Bloomberg School of Public Health and the University of Alabama and is MCHES and CPH certified. She brings a collaborative spirit and a deep commitment to designing inclusive, evidence-based wellness programs that empower individuals and strengthen public health systems.