Do you know that gifts and items you purchase through Amazon.com from this site gives back to the XP Society without adding any extra cost to you? Start your holiday shopping at Amazon.com right here!
CAMP SUNDOWN COVERUP CHALLENGE
November 10- February 18
Inspired by Heather H., PA, former camper
In support of our children with XP, porphyria, and other life-threatening sun-sensitivity disorders, please join us in the challenge to raise awareness about and vital funding for Camp Sundown.
Our goal is $100,000 for some important repairs, construction, replacement of furniture items and the Camp Sundown Program. 100% of the proceeds benefit the XP Society for Camp Sundown. The XP Society has no paid staff members. The challenge will run from November 10- February 18
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 firstname.lastname@example.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. (suggested donation $100.) The awareness will spread exponentially!
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!
visit us on Facebook!
In Loving Memory
Mary Hogan, aunt to founder Daniel Mahar, passed away on October 31, 2014 with her family by her side. She loved her five children and their families, her Irish heritage, Notre dame, the NY Yankees and the NY Giants. She has gone to join her husband of 50 years, Bill Hogan who left this world before her. Born on Christmas Day, Mary was a real gift to not only her parents, but to everyone who knew her. Her intelligence and wit were sometimes hidden by her obvious grace and dignity. Mary and her family have always been generous with their gifts of time and monetary donations to Camp Sundown.We will miss you very much Aunt Mary!
In lieu of flowers, the family has requested that donations can be made in Mary’s memory to Camp Sundown and to St John’s and St Joseph’s Memorial Fund in Rensselaer, NY.
Pawling Rotary Chocolate Festival
Saturday, November 15 1am-3pm as a huge success raising over $5000 for Camp Sundown!
The long Columbus Day weekend provided the perfect time for a final session of Camp Sundown for 2014. Campers enjoyed the harvest season with pumpkin carving, costume creating and Halloween party, crafts and a lot of fun. We had a nice visit with Wendy Guntert and her beautiful dogs and a last night campfire featuring Billy Flash, his sons and our good friend Zach Nayer wrapped up the camp in fun style. Special thanks to our volunteers Laura, Susan, Matt, Shannon and Chris!
Camp Sundown 2014… MardiGras Style!
CAMP SUNDOWN 2014 POWERED BY THE DFC
The largest private racetrack in the country, Wilzig Racing Manor in Taghkanic, NY, was the site of the DFC club event this year that sponsors all of 2014 Camp Sundown programs. Over $40,000 was raised through the generosity of the drivers to not only run Camp Sundown but also take care of some much needed repairs. Beautiful weather further enhanced all the good intentions at the Wilzig estate, allowing drivers to test the track and enjoy a gourmet-prepared luncheon. The Wilzig family and the DFC are philanthropic to many wonderful causes and we are grateful to be their charity of choice for this event. Thank you! Please be sure to visit the many photos from GSquardeMedia and Facebook!
CAMP SUNDOWN 2014 sessions, sponsored by the DFC are full and beginning July 7. Watch here for photos.
Meghan Elyse Fruchter
It is with a very heavy heart that we say goodbye to a dear friend, Meghan. To anyone who has ever been to, heard of, or seen Camp Sundown in action, you no doubt met Meghan in one form or another over the last nineteen years. She started as a camper coming with her family and has spent the last many years as a vital and integral part of how the whole program functions. From being “Queen of the Laundry Room” to organizing activities, games, awards around the campfire, Meghan shared with all of us her talents, creativity, caring and thoughtful spirit , always with her big smile and “hey, I got you” giggle. Her presence is very visible in the artwork of the poolroom, her “hobo” hotel, the hogwarts and school bus props, the glow in the dark twister game. It is so very hard to fathom her not being here, and we will expand on this portrait of Meghan in the upcoming weeks, but for now we want to say we love you, miss you and will never forget your beautiful soul, Meghan.
At the request of Meghan’s loving family, a donation to Camp Sundown in Meghan’s memory can be made out to “XP Society” with “Meghan” in the memo and sent to: XP Society/437 Snydertown Rd, /Craryville, NY 12521. Donations will be used for Camp Sundown, of which Meghan was a critical part. Donations will be acknowledged and Meghan’s family will be notified of your thoughtful generosity. Thank you.
The Crystal Star Award was presented to Brad Goldhammer for “commitment and dedication to the XP Society and Camp Sundown” by Meghan Fruchter, who shared fond memories of being a young camper in 1997 when Brad first volunteered. He and his family have been active volunteers since then!
Photo by Joan Goldhammer
Learn about xeroderma pigmentosum (XP) , a rare genetic disease, and about the Xeroderma Pigmentosum Society (XPS), dedicated to helping XP families, patients and those afflicted with similar life-threatening sun-sensitivity disorders.
The XP Society is a 501(c)(3) not-for-profit charitable organization founded in 1995 by Caren and Dan Mahar, whose youngest daughter, Katie, has xeroderma pigmentosum. The organization is a means to provide the XP family support and information needed to cope daily with XP. The XP Society has always been international in its scope and support, since its beginning.
The XP Society offers information, support, advocacy, and protection to the XP family, patient and caregiver while promoting research for a cure.
Disclaimer: These pages are developed by XP families for information and support and should never replace a medical visit or recommendation.