Location: Princeton, New Jersey
Author: Olivia A. Gordon
On a Saturday evening, six couples gathered around the tables of the Nassau Diner in Princeton, New Jersey. To the casual observer, this diverse group would have looked no different than any other group of diners enjoying time together over good food on a weekend. However, there was something unique about this group of people. They were gathered for Epilepsy Services of New Jersey’s (ESNJ) first couples retreat, Navigating Us: Connecting Through the Epilepsy Journey and half of the people around the table live with epilepsy.
In any group, you are likely to be in the presence of someone who is living with epilepsy as 1 in 26 people will be diagnosed with epilepsy at some point in their lifetime. Epilepsy is a chronic neurological condition characterized by recurrent seizures. There are many types of epilepsy, and it is often referred to as a “spectrum disorder” since it presents differently for everyone. Epilepsy Services of New Jersey has been supporting people with epilepsy and their loved ones for over 50 years, with Navigating Us being the newest addition to a wide range of awareness, advocacy and education efforts. For partners wondering “How can I support my spouse with epilepsy” or “How can I communicate better with my partner” this weekend was the perfect fit.
Over the course of the two-day retreat located at the Peacock Inn, participants learned more about communicating with their partner, navigating diagnosis disclosure, and planning for the future. Facilitators lead separate breakout groups of people with epilepsy and caregivers, allowing shared experiences to bubble up and supportive connections to form.
ESNJ entrusted Alison Kukla and Preston Reilly to facilitate this meaningful weekend of programming. Alison is a public health leader who has built a career in the epilepsy space and currently serves as Senior Advisor for Outreach and Education at Partners Against Mortality in Epilepsy (PAME). Preston, an educator and higher education professional, currently serves as Director of Student Engagement at Loyola University Chicago. While Alison and Preston were well-positioned to facilitate this retreat because of their respective expertise in their fields, they were uniquely qualified given their personal experiences. Nearly 20 years after her first seizure in college, Alison continues to navigate life with epilepsy. Since marrying Preston in 2020, the two have faced the realities of epilepsy and caregiving together—an experience shared by many who attend the retreat.
Navigating Us was ESNJ’s first couples retreat for people living with epilepsy. Participants expressed gratitude and positive feedback for the experience:
The Navigating Us retreat was an extraordinary experience for my husband and me. It gave us a sense of connection and community with other people who are going through the same thing we are. — Lindsey D.
Encouraged by how well this retreat was received by couples in the community, ESNJ is excited to continue serving in this way and to expand its list of programming which includes other events such as the Healing Hearts Collective, a bereavement retreat for parents who have lost a child to epilepsy; the Mothers Appreciation Event, a dinner honoring mother’s of children with epilepsy; and the Walk for the One, a 2-mile charity walk to raise awareness for the 1 in 26 people living with epilepsy. .
Our Navigating Us retreat is an example of how shared caregiving activities deepen connection and strengthen love. We plan to do more to support couples in their journey.” — Andrea Racioppi, Vice President, Epilepsy Services.
ESNJ was proud to offer this retreat free of charge to participants thanks to the generous support of program sponsors. Northeast Regional Epilepsy Group, Neurology Center for Epilepsy and Seizures, Neurelis and Neuropace each sponsored the event, making it possible for all couples to enjoy a restful and restorative weekend at the beautiful Peacock Inn in Princeton, New Jersey. This generous sponsorship made the Navigating Us experience possible for couples from throughout New Jersey and beyond.
Navigating Us is just one of the many services that ESNJ provides. Other programs and services include the Patience Assistance Program, the Healing Hearts Collective bereavement event, Mothers Appreciation Dinner, Seize the Wave, Day at the Beach, Walk for the One, Seizure Prepared U, scholarship programs and more.
Epilepsy Services of New Jersey is a proud member organization of Epilepsy Alliance America, a national organization providing hope and possibilities for individuals and families affected by epilepsy.
As Navigating Us wrapped up on Sunday afternoon after a delicious high tea in the Peacock Inn, couples who entered just a day before as strangers embraced each other, shared phone numbers, and promised to see each other soon. After just a day and a half together, these individuals had strengthened their relationship and built connections with other couples navigating a similar journey. The group plans to stay connected through reunion zoom meetings and attendance at future ESNJ events.
You can help ensure that meaningful programs like Navigating Us continue by supporting Epilepsy Services of New Jersey. Please consider making a donation 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 over seven years of 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.
