Madico has had the pleasure of providing our UV-Gard film to help people with an extraordinarily rare and incurable skin disease called Xeroderma Pigmentosum (XP). XP is a rare genetic disease where a person’s DNA lacks the ability to repair damage from UV light. It causes those who suffer from it to be extremely sensitive to the damaging effects of the sun and other UV radiation sources. XP can also lead to the early onset of skin cancer and melanoma.
For a number of years we have donated our UV-Gard film for use on custom protective hats. These specialized hats allow those with XP to be out in the daylight for brief periods such as walking to and from the car from a building. The main treatment of XP is protection from UV exposure.
We have also had the pleasure of getting to know Peyton, a little boy with XP. His mom, Sarah, has been instrumental in the promotion of XP awareness.
Sarah has explained how their family protects Peyton by using tinted window film on their home and car windows. Peyton also has to stay in the house until dark before he can go play with his friends. And, in order for Peyton to go outside, whether to play or simply walk from the car to school, he has to put on long sleeves, jeans, gloves, a jacket, sunglasses and sunscreen. He wears a special hat which provides him with the best protection for his head, face and neck. His mom makes his hats with our UV Gard film and a template provided by a group called the XP Family Support Group.
The XP Family Support Group has played a huge role in the lives of Peyton and his family. The group is dedicated to improving the quality of life of those affected with Xeroderma Pigmentosum through education and support services, researching effective treatments, and ultimately finding a cure. To assist in their fight, the group is hosting its Annual Golf Tournament this June to raise money for their cause. Madico is proud to be participating in this event as a gift bag sponsor. The group is also hosting a medical conference and Firefly Kids Camp for families suffering from XP this year.
This is a once in a lifetime opportunity for families to come together and meet other families that go through the same struggles. Kids go to UV safe kid camp activities and learn that they aren’t alone in their suffering. Lifelong friendships are made! We wish the XP Family Support Group success in their upcoming events and commend their efforts in helping those affected by this condition!