FIND YOUR SHADOW is a program that was created to help children with EPP live their dreams...with a little help from us!
Shadow Jumpers is excited to announce that applications are now open for our third annual FIND YOUR SHADOW program! This year, Shadow Jumpers is looking for kids who want to attempt to do something they have always wanted to try but may have not because of EPP. Whether that is tackling recess, attempting a camp, a specific family vacation, anything big or small …this is a time for you to share your dream. We ask EPP families to submit their story and tell us how we can help make living with EPP just a bit easier.
Applications are open now until Friday, March 28th 2020.
Recipients will be announced during Porphyria Awareness week (April 18-25, 2020).
This past August our inaugural family recipient was the Stuhlsatz Family! Clint (7) and Hattie (5) have suffered from EPP their whole young lives and got a full expense paid, sun-proof vacation to Disney World in Orlando, Florida. Their mom, Allison, said of the trip experience, “Going to Disney World was such an incredible experience. It exceeded our expectations. It felt like you were in a whole different world. The trip planning was excellent from start to finish, with minimal effort needed on our part. It was definitely a once in a lifetime opportunity and we got to experience so many activities that we never thought would be feasible for our family. Initially the kids would feel a little self-conscious like normal but as the fun began, they got so sidetracked by the excitement and thrills of being at Disney, they quickly forgot about their cover-ups and enjoyed being a kid! All the staff at Disney World are excellent and made us feel welcomed and supported. Our VIP tour guide went above and beyond getting us specialized treatment, and assuring we saw and did any activity that the kids wanted. Even more important, he was very conscientious of the kids’ EPP. He kept them in the shade and had UV protective umbrellas to keep them blocked when walking about. He was so considerate, fun and knowledge. He absolutely made the experience something we will never forget.”
Check out the Stuhlsatz family pre-trip video and some insight to how we went about sun-proofing the experience here