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.
Tell us about the upcoming documentary on XP.
This is very exciting! The Dark Side of the Sun is a professional documentary created by the Italian film company Citrullo International. It is three years in the making, involving two full years of filming at camp, visits to campers’ homes all over the world, and lots of editing. We had the wonderful experience of watching our two youngest and another camper do the voiceovers for the animated characters in the film. I can’t wait to see the final product! It should be out in late spring, early fall, televised globally, and presented through a couple of international film festivals.
What are some ways people can get involved with the XP Society?
On our webpage we list ways for people to become involved through volunteering their time and talent, hosting a fundraiser, donating items to camp, making meals to share with campers and monetary gifts. We have been blessed for sixteen years to be able to offer this program free to families of children who can never be in daylight, because of the generosity of so many. These last two years have been very hard economically, though, and we could always use funds for things we can’t get donated, like heat and electricity and transportation.
For more information please visit the XP Society’s web site.
See a video of when the New York Yankees hosted Camp Sundown back in 2009.