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The 26-year-old Ohioan has not let his rare genetic condition prevent him from having a rich life. But Trump’s second administration is creating new risks to his fragile health.

Want to make a difference for those with Epidermolysis Bullosa?

* Visit Doggie’s Friends to support Shane’s charity.

* Visit the website of the EB Research Partnership, and check out this appeal for support from Jill and Ed Vedder.

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