Contact UPA at 800-868-1292 or info@porphyria.org
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The porphyria community is lucky to be supported by dedicated physicians, researchers and advocates who work tirelessly to improve care and development new treatments for porphyria. The United Porphyrias Association is pleased to introduce you to some of them!
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My name is Craig Leppert, I have EPP and in 2017, I founded Shadow Jumpers which provides meaningful experiences and a sense of community to families suffering from sun-related conditions like porphyria.
I was born in Hawaii, grew up on the Jersey Shore and now I live in Los Angeles, so I like to say I've never done the easy thing when it comes to my life with porphyria. I grew up in a family that was very determined that we were going to have our own way despite our circumstances, and I think it’s made me more willing to be a little more aggressive in taking on life. It isn’t always easy, but I’m feeling very content with my life and disorder at this moment, which I think is the goal of a lot of people in our community.
When I was younger, I realized that my condition with the sun was either going to define my life or become a cool addition to the story of my life. I could let the sun dictate everything I do, and no one would push back on that. Or I could become the “that's the kid I told you about. That can't go in the sun” which I always thought was like, the coolest thing. In a world that wants you to be unique and authentic, being allergic to the sun is something no one can replicate. No one can buy. No one can get that haircut, you know? I think once you realize that you can kind of use that circumstance as a positive and to really use it to get forward in life.
The second thing is that when I was a freshman in high school, I had a bad reaction and I was out of commission for like 4 days, and no one really catered to me during those 4 days. It’s so hard to get burned and I’m a pretty positive person, but it was kind of humbling to realize that everyone’s got problems and they aren’t going to stop their lives for you. But I was able to pick myself up and keep moving.
These two things have really defined who I am, and in a much tamer way, I try to put those experiences and mindsets into everything we do at Shadow Jumpers.
After college, I moved to Los Angeles, and I remember when I shared that I was moving on social media there was this mixed response. A lot of people were saying “I can’t believe you would go there, it’s so hard to live there with the sun”, that kind of thing. I just kind of clocked it.
A few years later I was on one the many amazing groups for our community on Facebook, and a mom had posted about how her son might have to give up on his dream career because there was to much risk of sun exposure at the entry level. And there were a lot of comments about how sad it was, and how we can’t do the things we want to do. Just kind of helpless and how it isn’t fair for us. It made me mad because I thought there must be a way.
I started thinking about could we, as a community, give this kid and other young people as many wins as possible. If we could create opportunities for them and their families to do things that felt impossible, it might inspire them to keep trying to do those things don't seem possible.
It was a huge idea that I didn't understand was going to be the biggest and most exhausting undertaking of my life. Fast forward seven years and we've helped more than 13 families across the United States with a variety of conditions. We've retrofitted their homes. We've taken them on vacations. We've helped them with their medical bills. It's very it's very rewarding. It's very awesome.
Growing up with a condition like EPP, you feel very isolated from other people. You could be the only person in three counties around you that has, you know, any circumstances with the sun. But there was this camp called Camp Sundown. I never went, but I heard from other community members about how impactful it was for them.
Camp Sundown closed a few of years ago. Last year, Kristen (Wheeden, UPA President) and I were talking how great it would be if there was something to fill its place. We toured this amazing facility at Victory Junction and decided to go for it. So, this May, we’re going to have 20 families and 29 volunteers for a sun-free weekend.
I hope they walk away feeling more connected to their community and I hope they walk away seeing that it's possible to have a fun weekend and a fun experience with some tinkering. Most importantly, I hope that the kids walk away understanding that they aren’t alone. The day-to-day they live, the things they think about their condition, other people go through that too.
When I was younger, I loved is meeting other people and having the lingo that they used was the same to mine and the same trials and tribulations. I hope they’ll come away with a good experience and a couple pen pals.
We're really excited about this camp, it’s the culmination of seven years of hard work.
Looking forward, I think we want to look at getting more materials for parents. Something we’ve learned in this work is that we don’t have to worry about the kids as much as address the parents’ concerns and fears. There’s a need for the non-scientific information about raising a kid who has a condition like EPP. There are a ton of challenges: dealing with guilt, balancing the risk of getting burnt with encouraging your child to learn their limits, that kind of thing. How can we better share the experience and knowledge of those who’ve come before them?
We also want to continue to expand and support other photo-sensitive kids and communities.
Just thank you to all the silent warriors out there, you know, all the moms, the caregivers, the friends that stay in the shade with you, and all the people that go above and beyond when they don't have to. All that stuff really makes a difference in a kid's life.
Learn more about Shadow Jumpers!
