Programs 

Ongoing fundraising help to support our programs 

The Xeroderma Pigmentosum Society engages in activities and fundraising year-long so that XP patients and their families can attend Camp Sundown during the summer. We sincerely appreciate each and every person who volunteers, donates or contributes in other ways to make Camp Sundown and our ongoing programs a reality. There are many ways to help or get involved. For more information, please click on the links below. 

12th Annual Camp Sundown Golf Classic

Friday August 3 Copake Country Club

$100 per golfer

18 holes with cart, short gun start, 4-man scramble

Breakfast and lunch on course

Dinner, music and prizes at Churchtown Firehouse following

 

Register today                      Sponsor Camp                Volunteer                

Camp Sundown is free to campers and their families because of valuable events like our golf tournament. But it certainly isn’t free to run! Please help by joining in some way in our golf tournament. Thank you!

Camp Sundown CoverUp Challenge

Inspired by former camper, Heather H., the Camp Sundown Challenge is working to raise $100,000 for important repairs, construction, replacement of furniture and Camp Sundown, which supports children with XP, porphyria and other life-threatening sun-sensitivity disorders. 100% of the proceeds will benefit the XP Society for Camp Sundown. Camp Sundown is volunteer-based and has no paid staff members.  

The Challenge

 

1. Take one day… One small 24 hour day… and coverup like these children. Sunglasses are key, add your own extras of ultraviolet protection like gloves or floppy hats. Not looking for a full hazmat outfit, just more than you might normally do to protect against sun damage.

2. Take a picture and send it to us at xps@xps.org. We will post your wonderful efforts here and on Facebook.

3. Challenge three people you know to do the same. If they cannot, ask that they instead make a donation to Camp Sundown.

 

Spread the word through your Facebook page, your twitter account, your entire email list…approach friends, family , colleagues, co-workers… you would be surprised how many people you actually know and how many will support you in raising awareness and funds!

 

 

 

The XP 1500 Club

The XP Society has recently launched a capital campaign.

 

We are seeking 1500 donations of $1000. The goal is to raise $1.5 million (or more).

All of the funds will be safely invested in U.S. 10-year Treasury bonds and the interest income from these bonds will be used for funding Camp Sundown each year, and the bonds will remain untouched, permanently. Though the Camp Sundown building is paid for, the XP Society needs to cover more than $60,000 each year in expenses related to running the camp. The XP 1500 Club will help us keep Camp Sundown operating for families for many years to come. 

To join the Club, checks can be mailed to:

XP Society Inc.

437 Snydertown Road, Craryville, NY 12521

or by clicking the Donate link here.  

ADDRESS

437 Snydertown Road

Craryville, NY 12521, USA

 

Telephone: (518) 929-2174

 

Email: xps@xps.org

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Getting a rare disease diagnosis is terrifying for patients and their parents. You are not alone. We are here to support you and help you find the light in the darkness. The XP Society is a unique to the world program for children and families who can never be in daylight. We help provide the XP family support, information and the informative foundation on which to build a healthy and happy quality of life.

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© 2015 by Xeroderma Pigmentosum Society