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Welcome to Shadow Jumpers! This is a page for EPP kids and parents by EPP kids and parents. Shadow Jumpers was created in 2004 to help give kids with Erythropoietic Protoporphyria (EPP) and their families a place to learn about this rare disease, read tips and tricks learned over time, and hear from fellow kids. Through spreading awareness, fellow EPP interviews, tips to protect yourself outside, and some insight for parents, we hope all families living with EPP will look at this condition as a challenge they can overcome. Be sure to check out all the Shadow Jumper resources! We’d love to hear from you. Reach out to us anytime on general@porphyriafoundation.org!!
The main goal of Shadow Jumpers is to help kids living with Erythropoietic Protoporphyria do things they have always wanted to do but have not been able to because of the sun. There are only several hundred diagnosed cases of this ultra-rare genetic disorder in the United States – so we need to learn from and support one another! Pain from the sun combined with the mental discomfort kids can feel from having to cover up may lead kids to avoid certain activities, relationships, and paths in life.
Shadow Jumpers wants to show (and remind) kids that they can still follow their dreams! Whether that’s trying to play a sport outdoors, going on a family vacation, camping or whatever comes to mind, Shadow Jumpers wants to help. Click around to learn about some awesome EPP kids, how we are trying to do our part and how you can too!
Here are ways to connect with Shadow Jumpers!
We're happy to announce our family recipients for 2021's FIND YOUR SHADOW project and this year we are going to help more families, more wishes and bigger n better than ever. Between fulfilling long dreamed of personal trips to retrofitting homes and even going international for the first time, Shadow Jumpers and the APF can't wait to finish off the year taking down the sun with all of our new families! Check back to learn more about these amazing stories.
The Campbell Family from Massillon, OHIO
The Tonhaeuser Family from Hartford, WISCONSIN
The Zamora Family from Orcutt, CALIFORNIA
The Ludwig Family from Northern Cambria, PENNSYLVANIA
The Chadwick Family from the UNITED KINGDOM
