When we started out, I had to keep reminding myself, 14 years ago, with bake sales and car washes every weekend until we raised enough money for the first Camp Sundown. I remember being so proud that in our year we raised $10,000 for research for a cure and called on a scientist to present it. He laughed at me. Said it wasn't enough for lunch money for his scientists. I was not only crushed because to us it was a huge amount of money, but I also felt defeated as a parent. How were we going to help Katie? We used it to bring people together, XP families and experts, to share information, recreation, support and friendship under the safety of the stars through that very first Camp Sundown. Katie would not be alone.
It still is hard. The more we want to improve the lives of XP families, advance the XP research projects and enhance the programs for XP people through Camp Sundown, the more money is needed to accomplish the tasks. We are very blessed to have a lot of volunteer labor for camp as well as donations of toys and meals. But there are expenses we do have to pay out. We can always use help in this department!