Applications Open for EPP Program Find Your Shadow 2021

Marisa Wexler MS avatar

by Marisa Wexler MS |

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Applications are now open for Find Your Shadow 2021, an adventure program from Shadow Jumpers that aims to help children with erythropoietic protoporphyria (EPP) try new things they otherwise would not do because of their disease.

EPP is a type of cutaneous porphyria — a porphyria that affects the skin. The major symptom of EPP is severe pain upon exposure to sunlight. As such, children with EPP typically need to avoid any sun exposure, which may make them miss certain activities, even things as simple as playing outside.

Find Your Shadow works to help kids with EPP have an adventure — whether that means tackling recess, going to a camp, playing an outdoor sport, going on a family vacation, or anything else they can imagine.

In 2018, the inaugural program winners were treated to a guided trip to Disney World that was sun-proofed as much as possible. In 2019, another family also visited the Florida theme park.

The application, which is available online, is open to families with children ages 5 to 17 with EPP. One form asks for basic information and another seeks signed consent from the child’s parent or guardian.

Applicants also must include details about the requested experience and write about why their family should be selected. The more creative the application the better, Shadow Jumpers says, so those applying are encouraged to include photographs and other materials as supplements.

The application can be submitted by mail or by email; the deadline for submission is April 30.

Submitted applications will be reviewed in collaboration between Shadow Jumpers and the American Porphyria Foundation. Some families will be interviewed via video call before the final selections are made. Families selected for the program will be notified by email.

Anyone not selected for this year’s program is permitted to apply in a future year.

Previous Find Your Shadow selectees include the Stuhlsatz family, of Wichita, Kan., chosen in 2018, and the McKillop family of Blue Point, N.Y., picked in 2019. Both families received all-expenses-paid trips to Disney World that were as sun-proofed as possible.

The Stuhlsatz family said their trip was “out of this world.”

“Shadow Jumpers put us in a suite in Animal Kingdom so we could watch the animals from our balcony — and more importantly, in the shade and out of the afternoon sun,” the family said.

According to the McKillops, Shadow Jumpers’ “knowledge of where to stay, what to wear and how to balance out our days really made this the safest (and most fun) vacation we have had.”

The tour guide was knowledgeable about EPP and took the family through the park in different ways to combat the sun, they said.

“The resort they picked for us was with EPP in mind, having a late-night water park that our kids happily took advantage of,” the family said. “We’re so excited to see who Shadow Jumpers helps next!”

Shadow Jumpers was created in partnership with the American Porphyria Foundation by Craig Leppert, an EPP patient himself, to help the patient community overcome the sunlight barrier and pursue their dreams.