Light The Moment 2018

LIGHT THE MOMENT 2018

We are happy to announce “Light the Moment 2018.” This year, we  selected one family for an all-expenses paid trip to Walt Disney World in Orlando, Florida. This trip includes transportation, lodging, meals and making every step possible in the park EPP- friendly. We’ll handle the sun, you can bask in all the wonder of Mickey, Minnie and the gang! 

 

 

Congratulations toThe Stuhlsatz Family
Ben, Allison, Clint, Hattie and Blair

The Shadow Jumpers team received amazing applications for this Disney experience. The process of selecting one family was extremely difficult as every child who lives with EPP is important to us. We are thrilled to announce the recipient of Light the Moment 2018. Ben, Allison, Clint (6), Hattie (4), and Blair Stuhlsatz (6 months) are headed to Disney World this summer!! Though they experienced the classic symptoms since the age of 2, both Clint and Hattie were diagnosed with EPP last year. The Shadow Jumpers team is going to work hard to offer them a safe experience of a lifetime at the happiest place on earth. 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 from other 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…even at Disney! To learn more and submit your tips and tricks, visit: Shadow Jumpers