Leadership

A nonprofit organization dedicated to supporting photosensitive families, managed by patients and caregivers from those same communities.

Shadow Jumpers’ board of directors consists only of people with a photosensitive condition, a parent or family member to someone with these conditions, and a medical professional working specifically in the field

One of our 7 board seats is always held by a youth ambassador.

Craig Leppert 

"My sister and I were diagnosed with EPP at an early age, and we were impacted by our parents' commitment to having as normal an upbringing as possible. I quickly realized that with some creativity the sun was an easy obstacle to work around in my life."

Kristen Wheeden

"EPP is a family affair – and our whole family has rallied around our son, Brady, since he was diagnosed with EPP in 2009. We’ve always tried to create a way for him to try anything he wants to do. I’m proud to support Shadow Jumpers and to offer a bit of joy to other shadow jumping kids around the world!"

Ginger Zona Gonsalves 

"I was diagnosed with EPP at the age of two along with my brother who was eighteen. I am grateful to be a part of Shadow Jumpers, an organization focused on supporting the youngest members of our community and their families. "

Allison Stuhlsatz

"I have two kids with EPP and I know how isolating and discouraging it can feel at times. I am blessed to have this opportunity to give back and can’t wait to help others have experiences they never thought possible!"

Colleen McKillop

"I am a parent of a child with EPP. I am so excited to be a member of the Shadow Jumpers board because I know firsthand how hard life with EPP can be for the whole family. I can’t wait to be able to help pay it forward to other families like ours. "

Raaj Kapoor

"As a clinical researcher, I'm very familiar with the wonderful work Shadow Jumpers has done for our families through the years. Seeing this impact makes me so excited to be part of this amazing organization in supporting families through providing meaningful experiences"

Addy Griffiths

"As a child to a parent with EPP, I see how difficult it can be for my mom and the impact it has on all of our lives. I hope to spread awareness about these conditions and help families impacted find ways to still live their lives to the fullest.