UPA and Shadow Jumpers to host sun-free camp experience in May

20 children with sun sensitivity conditions will attend Sun Escape Weekend

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by Mary Chapman |

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The United Porphyrias Association (UPA) and the nonprofit advocacy organization Shadow Jumpers are teaming up to give 20 U.S. children with sun sensitivity conditions, along with their families, a safe and special camp experience this May.

The event, dubbed Sun Escape Weekend, will allow these children, ages 6-16, the opportunity to be together with other kids with similar medical conditions, and to enjoy a variety of activities at a camp experience created for youths who are sun sensitive.

It will take place May 3-5 at Victory Junction in the rolling hills of Randleman, North Carolina. Families chosen through the now-closed application process will be reimbursed by Shadow Jumpers and UPA for their travel expenses.

The two nonprofits created the event for children with disorders such as one of the five forms of cutaneous porphyrias — a porphyria class that primarily affects the skin and causes patients to be extremely sensitive to light.

“This transformative weekend will bring together 20 kids with sun-sensitive conditions … and their families from around the country to celebrate all things fun and all things no sun in a way only we know how,” UPA stated on an event webpage.

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Camp experience will feature activities in the evening or indoors

Throughout the weekend, activities will take place indoors or late in the evening — and will include bowling, horse riding, archery, fishing, zip lining, arts and crafts, and mini golf. The camp experience also will feature a super dome, a woodshop, a petting zoo, and a recreation center.

“Even better [than] the activities will be the opportunity for our campers and their families to connect with others facing similar circumstances with the sun, some for the very first time,” the UPA webpage states. The Maryland-based association, which seeks to improve patients’ lives and advance porphyria awareness and research, was established in January 2022.

The goal of Shadow Jumpers, founded in December 2017, is to ensure that individuals with a rare sun condition “don’t feel alone” by offering meaningful experiences and a sense of community, according to its webpage. Most of the organization’s team members either have a sun sensitivity disorder or parent someone who does.

In addition to helping families take so-called sun-proof vacations, the organization assists with residential retrofitting and provides financial help to families who, due to medical expenses, are behind on bills. Shadow Jumpers, which accepts applications year-round on a rolling basis, also seeks to connect U.S. families who are experiencing similar journeys.

“Even though a sun disorder usually only affects one member of the family physically, these conditions impact everyone in the home,” the webpage states, noting that the organization wants to help all involved “become more comfortable and educated with these circumstances.”

The group’s name comes from the practice, common among individuals with sun sensitivity, of jumping from one shadow to another while outdoors to minimize exposure.

“For kids, getting the chance to participate in something they never thought was possible can give them the courage to take on future goals around the sun,” the organization states. “Parents feel more optimistic about trying and creating new moments for their family after being educated on tips and tricks from other moms and dads.”

Since 2004, Victory Junction has sought to enrich the lives of children with serious illnesses and chronic medical conditions, including those with skin diseases. It offers a no-cost camp experience in a medically safe, 84-acre environment. To date, Victory Junction has provided more than 115,000 experiences for campers and family members.