Entries by michael

Intercollegiate Collaboration Provides Life-saving UV Protective Hats for Children

For many people, appearance or comfort is the most important consideration when choosing a hat to wear. But for people living with Xeroderma Pigmentosum (XP), an inherited disease that causes an individual to be extremely sensitive to ultraviolet radiation, health and safety must take precedence. As part of her ongoing efforts to raise awareness and […]

Guatemala Support

The XP Family Support Group (XPFSG) is committed to helping people with the rare genetic disorder called Xeroderma Pigmentosum, or XP. People with this condition cannot tolerate the ultraviolet radiation in sunlight, so even a few minutes of sun can cause cell damage that inevitably turns to cancer. XP is extremely rare, affecting one child […]

XP and Covid 19

Dear Patients and Family members Thank you for your participation in our research at the National Institutes of Health on the DNA repair conditions xeroderma pigmentosum, trichothiodystrophy and Cockayne syndrome. During these difficult times we would like to provide you with some information to help you and your families stay healthy. COVID-19 is a new […]

Meet Jax

Meet Jax, a bubbly little boy with a big, bright smile that can light up any room. Some might believe that having XP would slow Jax down, but that’s not the case at all. With the use of 3M Window Films on his home, car, and even school, Jax is no longer doomed to a […]

Rare disease causes an extreme sensitivity to sunlight

Everyone has sun-sensitive skin. It’s the reason we tan and sunburn. It’s why freckles, age spots, and skin cancers appear. Some people are born more sun sensitive than others. People who have an extreme sensitivity to sunlight are born with a rare disease known as xeroderma (zer-o-der-ma) pigmentosum (pig-men-toe-sum). They must take extreme measures to […]

“Midnight Sun” as reviewed by TitaniumAmy

Book Review: Midnight Sun by Trish Cook (soon to be a major motion picture) The book Midnight Sun is told from the perspective of a girl named Katie who has Xeroderma Pigmentosum (XP). But, the story is greatly exaggerated. Katie says that even if the sun touches her skin, she will die. So she stays […]

Riley McCoy, the girl who can’t go out in the sun

Have you ever truly considered the sunset? Riley McCoy has. When you think about it, the sun doesn’t set at all. It doesn’t drop or recede. The sun is fixed and relentless to the point that, every evening, the earth turns away. Riley is 17, trying her best to have a typical senior year in […]