Shadow Jumpers

Shadow Jumpers We provide meaningful experiences & a sense of community to families living with photosensitive conditions The sun can seem like an impossible enemy.

One who dictates every decision, big or small, because no matter where you go the sun is (quite literally) everywhere. It could be understandable to let that affect what you do for fun, what you do at school, where you go on vacation, what career you choose, where you live and so much more. But the one thing that is more powerful than the rays of a 4.5 billion year old star is the power of Perseve

rance. It’s the founding principle of our vision to assist every person wanting to combat their sun disorder and take back control of their story. This is our Mission:
We’ll Remove the Sun, You Remove the Doubt. Combating the Sun comes in a wide variety of experiences, renovations, accommodations and communities. They impact everyone involved – kids, parents, siblings, friends, colleagues, sponsors and even medical professionals. For kids, just getting the chance to accomplish or participate in a dream you never thought was possible can give them the courage to further tackle barriers they may have put up for themselves and the sun. Parents might feel optimistic to try and create new moments for their family on their own. And others might realize all they have to offer now that they are connected with thousands of people just like them going through their own hardships.

06/04/2026

At Shadow Jumpers we provide meaningful experiences and a sense of community to individuals and families living with rare photosensitive conditions. We are a 501c3 nonprofit founded by patients, caregivers and medical professionals specifically from the same rare photosensitive community we aim to assist.

For the families we work with, even a few minutes exposed unprotected outside can lead to 2nd degree like burns or even skin cancer. Our mission isn’t to find a cure for these conditions but to be the leading voice in living with these unique circumstances regarding the sun and harmful light and fostering a positive impact towards a patient’s photosensitivity.

Since 2017, we have provided sun-proof vacations, home renovations, financial assistance, and transportation help, along with a safe camp experience tailored specifically for photosensitivity.

week 178: "I tried walking in direct sunlight once. It was a very illuminating mistake."
05/31/2026

week 178: "I tried walking in direct sunlight once. It was a very illuminating mistake."

Today on Global Porphyria Day, we stand with the warriors, families, and advocates affected by porphyria across the worl...
05/18/2026

Today on Global Porphyria Day, we stand with the warriors, families, and advocates affected by porphyria across the world. 💜

Porphyria may be rare, but our journey living with this rare condition unites us in a way so no one ever feels alone.

At Shadow Jumpers, we’re committed to raising awareness for all photosensitive related porphyrias, supporting the greater rare disease community, and helping shine a light on conditions that are too often misunderstood.

Together, we can turn awareness into action, compassion into support, and stories into strength. Today and everyday.


Week 177: “The shade from a tree or building hits the sidewalk and suddenly it’s my VIP lounge. 😎😎🪭🆒”
05/17/2026

Week 177: “The shade from a tree or building hits the sidewalk and suddenly it’s my VIP lounge. 😎😎🪭🆒”

The sun sucks. But YOU do not. ☀️💜 it’s been our rallying cry uniting all the photosensitive conditions we assist in our...
05/14/2026

The sun sucks. But YOU do not. ☀️💜 it’s been our rallying cry uniting all the photosensitive conditions we assist in our community. The sun may create incredible obstacles but those obstacles are worth tinkering and adapting around to have the moments worth living.

Different conditions. Different stories. Same reason to show up covered, creative, confident, and ready to live our best lives.

Amazing read featuring the one and only Emily Pearson. Beyond being a dedicated Sun Escape volunteer and an important pa...
05/14/2026

Amazing read featuring the one and only Emily Pearson. Beyond being a dedicated Sun Escape volunteer and an important part of the Shadow Jumpers family, Emily is a powerful example of what it means to embrace a photosensitive diagnosis with strength, grace, and resilience, all while navigating an ever-changing landscape of approved and emerging treatment options.

The denial was a shock because the Trump administration had fast-tracked the drug. The manufacturer can still seek FDA approval with better proof that it treats a painful skin disorder.

Week 176: “Everyone else goes outside for sunshine.I go outside to inspect the quality of the shade.”
05/10/2026

Week 176: “Everyone else goes outside for sunshine.I go outside to inspect the quality of the shade.”

05/08/2026

For people with EPP, sunlight can cause excruciating pain in just minutes. Many patients can tolerate only 5–15 minutes of sun before symptoms begin.

But patients taking Bitopertin through Disc Medicine’s clinical trials have reported something many never thought possible: staying outside for HOURS.

Earlier this year, the FDA issued a Complete Response Letter to Disc, deciding to wait for results from a Phase 3 trial before approving the drug, even though earlier studies showed it significantly lowers protoporphyrin levels and the drug had been through years of health and safety testing having been originally developed for another cause. For the EPP community, the impact and data is beyond clear.

We ask you, EPP’ers: how much has your sun time changed while on Bitopertin? Tell us below. ☀️

Address

233 E Main St
Manasquan, NJ
08736

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