Welcome to Shadow Jumpers! This is a page for EPP Kids and Parents BY EPP Kids and Parents. Shadow Jumpers was created to help give kids with Erythropoietic Protoporphyria (EPP) and their families an opportunity to learn about this rare disease, read tips and tricks learned over time and to hear from fellow kids. Through spreading awareness, fellow EPP testimonials, tips to protecting yourself outside and some insight for parents, we hope all families with EPP will soon look at the sun as a challenge they can overcome. Be sure to check out all the Shadow Jumper resources at the bottom of this page.
Say Hello to “_______”!!!
Every Mascot Needs a Name! We need your help.
We’re currently looking for suggestions to name
our very own Shadow Jumpers mascot.
Do you have a great name idea?
Send us your best ideas to: firstname.lastname@example.org
Here’s how it was developed:
This is a porphyrin molecule
This is Protoporphyrin IX. In a person with EPP,
it is what circulates through the body in your blood.
A reaction is triggered when Protoporhyrin IX is exposed to visible light – the sun
This is a Shadow Jumper!
A Shadow Jumper hops from one shadow to another to avoid the sun to stay safe!
Be a Shadow Jumper on Snapchat!
Now you can be a Shadow Jumper wherever you go thanks to the SHADOW JUMPERS Snapchat filter!
Email us your Snapchat username to email@example.com.
Shadow Jumper Resources
This is a place for kids to learn from others with EPP, to share their own tips and tricks on things like what to wear, what to do for fun, insight for parents and so much more.
Enter to win an ALL expense paid trip toWalt Disney World in Orlando, Florida
We know growing up with EPP has its challenges. You may have to cover up and look different outside or may be stuck indoors on those hot sunny days but what's important is to know that you aren't alone out there
Every little bit helps here for the Shadow Jumpers to reach our goal of helping EPP kids and their families.
What better way to be a Shadow Jumper than to cover up outside (or show off INSIDE) with some Shadow Jumpers official apparel.