Camp Sundown for XP Families (Aired on AM on Sept. 27 & on FM on Sept. 29, 2013)

(Standing. L to r) Jonah Triebwasser, Sarah O’Connell  (Seated) Caren Mahar

(Standing. L to r) Jonah Triebwasser, Sarah O’Connell (Seated) Caren Mahar

The nonprofit XP Society provides families with support and information needed to help their children suffering from Xeroderma Pigmentosum (XP) or other life-threatening sun-sensitivity disorders. XP easily causes skin and eye cancers so families must be very careful about lighting. Caren Mahar, Executive Director and Co-founder with husband Dan of the Society, describes the special accommodations needed, including tinted windows and dimmed incandescent lighting, because even sunlight hitting a white wall can cause severe third-degree burns. Ms. Mahar, whose daughter suffers from this disease, explains how families struggle, under great hardship, to provide their children with normal lives: to go to school, travel, shop, and meet friends like themselves. Ms. Mahar describes Camp Sundown in Craryville, NY, the only camp of its kind worldwide, whose campers enjoy the thrill of camping life by sleeping during the day and starting their camp activities at dusk. Free to families, the camp can accommodate up to 200 people, including parents and siblings who attend with their camper child. Support comes from private citizens and groups such as the Patterson Rotary Club whose members volunteer and make donations. Ms. Maher says, “There is hope to make things work for your family.”

Learn More:
The XP Society
Xeroderma Pigmentosum (XP)

Did you like this? Share it:
September 27, 2013 · Posted in Health, Service Organizations  

  • Saturdays - 11:30 a.m. - WTBQ 93.5 FM and 1110 AM www.wtbq.com
    Sundays - 6:30 a.m. - WBPM 92.9 www.wbpmfm.com and 9:30 a.m. WGHQ 920AM & 92.5 FM, WBNR 1260AM and WLNA 1420 www.realcountryhv.com
  •  

  • News

    RadioRotary has won the Award for Excellence in Broadcasting for the second year in a row! read more....

     

  • RadioRotary Moments

  • Featured RadioRotary Show


    Seated: Skip Rottkamp. Standing: Co-hosts Jonah Triebwasser, Sarah O’Connell.

    Click here to listen to Assistant Governor Skip Rottkamp (Rotary District 7210) from Fishkill Rotary discusses project Operation Warm.

     

  • Rotary Is “This Close”

    Achieving Its Goal of a Polio-free World

    After more than 25 years of hard work, Rotary and its partners are now "This Close" to eradicating polio, and a wide array of public figures and celebrities have signed on to help Rotary spread the word. Headlined by Microsoft Corp. Chairman Bill Gates, this diverse lineup of influential leaders and personalities includes Archbishop Emeritus Desmond Tutu, action movie star Jackie Chan, conservationist Jane Goodall, premier violinist Itzhak Perlman, Grammy Award winners A.R. Rahman, Angelique Kidjo and Ziggy Marley, golfing great Jack Nicklaus, and peace advocate Queen Noor of Jordan.

    Click here to learn more.

     

  •  

     

  • RSS Rotary News

  •