We just left the XP Family Support Group Medical Conference in Kansas City. This conference happens every two years and brought close to 150 people from the US as well 5 other countries. The adults have three days of learning with topics ranging from the practical- making business cards to explain XP to people you encounter, to finding about current research on neurologic issues in individuals with XP.

Firefly Kids Camp happened at the same time for all the kids. They have crafts and games as well as education on healthy skin care. More importantly, they get to spend time with other kids whose families have been changed by XP. Liberty made fast friends with several other girls her age who have the same condition as Pacific. The XPFSG had made special arrangements for Pacific to be cared for and participate in kids’ activities while I was in conference, but his dad elected not to allow him to come at the last minute.

The final, but one of the most important components of the conference was connecting with the other families and enjoying time with your own. They arranged special activities for us each night- three nights at the indoor waterpark, a trip to Arrowhead Stadium, and a visit to Legoland and other attractions in Crown Centre. It was an amazing experience!

More posts forthcoming about the emotional intensity of the conference, what I learned, and the conference from a kid’s perspective.