Introducing Shadow Jumpers!!

Hey everyone! The APF is creating our own version of a "Kid's Corner" focused on children with EPP. Our website will soon have a section called Shadow Jumpers. This will be 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. We need your help to get started!

We are looking for YOUR tips and tricks on managing EPP. If you are a caregiver, please ask your child with EPP to share their ideas through you. These could include...

  • What clothes and trends do you use when covering up from the sun?
  • What are the ways you adapt to do certain activities outside?
  • What are fun things you do to pass the time inside while the sun is out?
  • What have been your best vacations?
  • How do you manage in the car? Learning to drive?
  • What do you do when you feel sad or left out?
  • How do you manage going to school?
  • How do you describe your EPP to other people?
  • ...and anything else you think may be helpful to others!

Please submit all your tips in detail to:  shadowjumpers@porphyriafoundation.org

We encourage you to send pictures or videos pertaining to your tips!

We can't wait to hear from you!

Stay tuned for more from Shadow Jumpers!