A Weekend of Light-Free Joy: Volunteering with Shadow Jumpers and the UPA at Victory Junction
Nestled in the heart of North Carolina, Victory Junction is a medically safe, fully accessible camp built to empower children with serious illnesses and chronic medical conditions. Founded by NASCAR’s Petty family in honor of their son Adam, the camp provides year-round programs - always free of charge - that are designed to uplift, energize, and connect kids who typically face tough medical journeys.
Victory Junction offers a wide array of inclusive activities such as archery, arts and crafts, boating and fishing, horseback riding, mini-golf, bowling, and even a water park. All camp facilities are thoughtfully designed so that every child, no matter their condition or ability, can participate fully. Beyond their in-camp experiences, the camp’s REACH team extends the magic to hospitals, clinics, and Ronald McDonald Houses across the Carolinas -bringing camp to those who can’t come to camp themselves.
This past weekend, I had the privilege of volunteering at one of the most unique and heartfelt events held at Victory Junction: a special retreat hosted by Shadow Jumpers and the United Porphyria Association for children with all types of photosensitivity, including Erythropoietic Protoporphyria (EPP) - a rare porphyria condition that causes extreme sensitivity to light, particularly sunlight.
Shadow Jumpers is a nonprofit organization founded in 2017 by patients and caregivers living with EPP. The organization is dedicated to providing meaningful experiences and a sense of community to families across North America affected by photosensitive conditions. Their initiatives include sun-proof vacations, home renovations to create UV-safe environments, financial assistance for medical bills, and a 'pay it forward' protective clothing drive.
The United Porphyrias Association (UPA) is a nonprofit organization that supports individuals and families affected by all types of porphyria, a group of rare metabolic disorders. Through education, advocacy, and research partnerships, UPA works to improve quality of life, accelerate diagnosis, and promote access to care and treatment. Their mission is to empower patients and lead the charge for greater awareness, collaboration, and support in the porphyria community.
In 2024, Shadow Jumpers and United Porphyrias Association partnered to introduce Sun Escape, an annual transformative camp weekend specifically designed for photosensitive families. Every detail of this experience is thoughtfully sun-proofed, either indoors or scheduled for the late evening. Activities include archery, horseback riding, zip lining, bowling, salon with your choice of hair colouring and let’s not forget a camp favorite, evening fishing. When the sun goes down, the fun continues with outdoor games and even a carnival feel night filled with pop-up games and jumpy castles . Completely free for all attendees, Sun Escape emphasizes eliminating sun exposure, allowing American & Canadian families to concentrate on enjoying their time together.
EPP, and other phototoxic conditions, can make even a few minutes in the sun unbearable, causing severe pain and lasting skin damage. For families living with this condition, life revolves around avoiding sunlight. Many children grow up without ever meeting another person like themselves. That’s why this weekend was so important and so moving. In addition, all expenses were covered for each child and their family. That meant everything from travel and lodging to meals and programming was fully paid for so families could simply show up and enjoy.
Victory Junction stepped up in an extraordinary way. Every window and light-exposed surface at the camp was carefully covered with blackout material to ensure complete protection for the photosensitive campers. It created a truly safe space - possibly for the first time in their lives - where kids could run, play, and explore without the constant threat of pain from light exposure.
Over the course of the weekend, I watched children who usually live in darkness come alive with laughter. I saw parents, many of whom had never met another EPP family, sharing stories and tears. The sense of belonging was profound.
One phrase echoed throughout camp all weekend, becoming the unofficial motto of the event: “ALL Fun - No Sun!”
As a Board member for Canadian Association for Porphyria and a volunteer, I was deeply inspired by the strength and joy that filled Victory Junction. The collaboration between the compassionate staff, the visionary leadership of Shadow Jumpers and the United Porphyrias Association, and the courage of every family created something magical. This weekend was a reminder that inclusion isn’t just about accommodations - it’s about making space for people to truly thrive. And for the families living with EPP, Victory Junction wasn’t just a camp - it was a beacon of connection, hope, and joy in a world that too often leaves them in the shadows.
Jim Bowie
CAP Board Member