Research has been going on in France for a long time on delivering a correction to the defective gene using retrovirals to turn an XP gene "normal". On Long Island, a company dedicated to curing skin cancer (and XP has the largest amounts of skin cancer in the population at 2000 times the rate) has created a DNA damage repair creme that repairs damage done to skin cells from sunlight, thus preventing future skin cancers. This is on a fast track with the FDA now after many years of clinical trial with XP patients.
Just recently, Transgenic mice bred in the lab have achieved the physical characteristics of XP patients who have neurological implications. This may better help us understand how approximately 20% of all XP patients lose the ability to see, hear, walk and talk. The XP disease was discovered in 1860 by Kaposi, and in about 1960, Dr James Cleaver, still at UCSF, discovered that ultraviolet light was what caused the cell mutations that would lead to cancers in XP patients. XP research is used, because XP is an aging disease; speeding up the end result in research projects, in studies relating to many diseases including but not limited to renal transplant issues, skin cancer (which is internationally epidemic), Alzheimer's, and Parkinson's disease.
The XP gene is an open window to the study of so many other conditions. It is now time to concentrate on XP for XP. We have been told very recently that a cure can be achieved for XP for about five million dollars. How much was that last space toilet?
How difficult is it to raise funds for the XP Society?
Hard question! Huge job! As parents of an XP child, we hold a lot of emotional involvement in our duty to find a cure and help patients around the world suffering this disease. Sometimes that's an asset, sometimes not. I take it very personally when someone says "no." It's like trying to sell Girl Scout cookies all over again at 10 years old. Sure it's a great product, sure XP research and Camp Sundown are vital, but that doesn't mean everyone is interested.