What is XP? It is a rare genetic disease where patients cannot be exposed to sunlight or they will quickly develop skin cancer.
The Xeroderma Pigmentosum Society was started by Caren and Dan Mahar after their daughter Katie was diagnosed with the disease. Located in Craryville, New York, the charity helps people with XP and supports research into finding a cure. It is believed that finding a cure for XP would also have a major impact on finding a cure for all cancers.
The XP Society also sponsors Camp Sundown where kids with XP have their own camp which is held in the dark to avoid sunlight.
Caren provides us with an update on how the XP Society is doing and, most important, how you can get involved.
Are you making preparations for this summer's Camp Sundown?
We make preparations all year-round! Currently we are working on cleaning up the damage and debris from the bad winter...downed trees, mostly, some burst pipes. We have scheduled our activities, our camps are full with waiting lists and we are seeking volunteers to help with children, meal preparation and activities. Funding is an issue every year, and these last two years have been the worst, but somehow we are able to make it through with the generous support of donors.
Can you update us on the progress of research into finding a cure for XP?
Not really. Though we have close ties to specialists in the research field for XP, we are hearing nothing new. I imagine the federal budget cuts over the last few years have greatly affected [the] ability to study rare diseases [given] the [more common] diseases that affect so many and the horrific natural disasters all around.