Shadow Jumpers

 

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: shadowjumpers@porphyriafoundation.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!

 

 

 


 

JOIN US ON     

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 shadowjumpers@porphyriafoundation.org.

 


 

Shadow Jumper Resources

 

Bright Ideas

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.

 

 

LIGHT THE MOMENT 2018

 

ALL expenses paid trip to Walt Disney World in Orlando, Florida 
Winner has been announced. Please visit the link to read more about the winners.

 

 

 

 

 

KIDS WITH EPP STORIES

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

 

 

 

DONATE

Every little bit helps here for the Shadow Jumpers to reach our goal of helping EPP kids and their families.

 

 

 

Store

What better way to be a Shadow Jumper than to cover up outside (or show off INSIDE) with some Shadow Jumpers official apparel.