Child Life Society Inc

“The form 990 is prepared by an outside accountant and is presented in its entirety to the board before filing.”

“UPON REQUEST.”

“Child life society improves the quality of life of individuals living with cystic fibrosis (cf) and other life-threatening and life-shortening genetic lung diseases. Our signature program, the lifeshine respite in key west, fl, helps families with sick children experience the remarkable benefits of the unique climate with heavily salinated ocean air in specially designed and maintained facilities for individuals with cf. Other core services include: counseling, information and referrals, assistance improving access to and affordability of cf medicine, equipment, therapies, and treatments, and assistance maintaining healthier home environments to help families navigate the complex requirements and unique challenges of raising healthier children with cf. In a typical year, 90 families with children suffering life-threatening and life-shortening impacts of cystic fibrosis benefit from an array of services through the incredible generosity of child life society contributors.”

“4a.lifeshine respite: child life society (cls) provides respite trips at no cost to children with cf and their families. We have observed that sending families for respite in locations not designed for our individuals with cf led to a variety of unnecessary stressors and health risks for the children and families. Cls launched a multi-year campaign to build specially-designed facilities in which families of children with cf would be able to enjoy safer, less stress respite. We have successfully funded and built two (2) respite homes to-date, with the goal of three (3) more within ten (10) years to meet the increasing demand for services. In 2017, the two lifeshine respite homes provided 10 therapeutic respite trips to 16 children with cf and their families (69 total individuals) at no cost to the family. Trips include as needed, ground transportation, airfare, accommodation, food and other expenses. Requests for services continue to increase and increasingly strain the capacity of the organization to respond.”

“4b. Information, referral & support: child life society served 83 children with cf, 25 parents with cf, and 291 of their family members in 2017 (90 families). Based upon needs assessments, child life society provided direct support and relief to these families including assistance obtaining vitamins, medicine, medical equipment, therapy, treatments and household help to ensure cf-safe home environments. Child life society conducts outreach and education to increase awareness and understanding of cf, and to help increase access to available services for families. In 2017, we conducted three (3) educational events that helped raise awareness and educated more than 310 individuals in new york, new jersey, florida and canada. Child life society conducted seven (7) support group meetings via five conference calls (150-200 individuals) and two dinners (42 individuals).”