irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $04B. 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).
named programs · 11 · from sources
What they call their work
Ancillary Hospitalization Costs
Subsidizes insurance premiums, co-payments, and other non-covered expenses associated with frequent hospitalizations for CF patients.
Educational Support
Offers tutoring stipends to help CF patients keep up with schoolwork disrupted by medical appointments and hospitalizations.
Exercise Equipment & Sports
Purchases exercise equipment such as treadmills and supports attendance at summer sports camps to promote lung health through physical activity.
Helpline Support Services and Teleconferences
Provides a helpline offering professional referrals, expert advice, emotional support, and educational teleconferences for CF family members.
Holiday Stipend
Provides financial stipends for food and clothing during holidays to alleviate seasonal financial strain on CF families.
Housekeeping Help
Offers financial assistance for housekeeping services to reduce the burden on families caring for a child with CF.
Lifeshine Respite
Subsidizes therapeutic respite trips to Key West, FL, where families stay in private homes with saltwater pools and benefit from ocean air that helps improve lung function in CF patients.
Medical Equipment Assistance
Provides funding for essential medical equipment such as ABI Vest Airway Clearance Systems, nebulizers, and oxygen tanks that are often unaffordable despite insurance.
Nutritional Supplements Program
Supplies high-cost nutritional supplements to support healthy weight gain and overall well-being in children with CF who suffer from pancreatic insufficiency.
Post-Partum Subsidies
Provides financial support for household and childcare help for mothers recovering from childbirth while managing care for a child with CF.
Support Groups
Organizes social and uplifting outings for CF parents, especially mothers, to reduce isolation and foster community connections.
activities · 4 groups
What they do
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Familial Support for Rare Genetic Conditions 2 activities
- Deliver telehealth and emotional support servicesOperates a helpline and telephone support services offering professional referrals, expert advice, emotional support, and educational teleconferences for families of cystic fibrosis patients. Also hosts support group meetings, including virtual and in-person gatherings.
- Organize community-building and supportive outings for caregiversOrganizes supportive outings such as spa days, boat rides, and comedy nights for mothers of children with cystic fibrosis to reduce isolation, build community, and support mental well-being.
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Medical Travel and Housing Support 1 activity
- Operate respite housing program in Key West for cystic fibrosis patients and familiesOperates the Life Shine Respite House in Key West, FL, providing therapeutic stays with access to saltwater pools and ocean air, which result in improved pulmonary function and rapid symptom relief. The homes are maintained with high cleanliness standards and natural solid wood furniture to support CF-safe environments.
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Adaptive Equipment Provision 1 activity
- Provide comprehensive support services for cystic fibrosis patients and familiesDelivers a range of direct support services including medical equipment (such as ABI Vest systems, nebulizers, and oxygen tanks), nutritional supplements, financial assistance for insurance premiums and co-payments, housekeeping help, and childcare and post-partum subsidies. The organization also funds tutoring stipends and exercise equipment or camp attendance to support educational and physical well-being.
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Uncategorized 1 activity
- Conduct educational outreach events on cystic fibrosisHosted three educational events in 2017 that reached over 310 individuals across New York, New Jersey, Florida, and Canada to raise awareness about cystic fibrosis and its management.
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financials · form 990 · fy2024
revenue
Total revenue$432K
Contributions & grants$432K100%
Program service revenue$00%
Investment income$00%
Other revenue$0
expenses
Total expenses$318K
Program expenses93%
Admin / overhead2%
Fundraising6%
Salaries & benefits$56K
Grants paid out$0
Largest expense lineFacilities
balance sheet
Total assets$2.02M
Cash$-16K
Investments$0
Liabilities$19K
Net assets$2.00M
Liquid reserves-0.6 mo
4 years on record · 2020–2024 · YoY revenue +0.9%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| CHAIM A WOLKENFELD | SECRETARY | 40 | $52K |
board members · 2
- BERT ZAKROFF — TREASURER
- MORDECHAI RUMPLER — PRESIDENT
relationships · 3
Who they work with
- Cystic Fibrosis Foundation Partner — References the Cystic Fibrosis Foundation website as a source of additional information on cystic fibrosis.
- New England Journal of Medicine Partner — Cited source of evidence supporting the therapeutic benefits of high-salt environments for cystic fibrosis patients.
- Rabbi Chaim Wolkenfeld Government — Key leader and personal liaison for families, coordinating medical, emotional, and logistical support through Child Life Society programs.
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Community Education to Improve Service Accessmethodology: community_education_and_outreachBy increasing awareness and understanding of cystic fibrosis through education and outreach, we improve families’ access to services because informed caregivers are more likely to seek and utilize available medical and support resources.
- Exercise as Prescribed Therapymethodology: exercise_as_clinical_interventionBy promoting structured exercise as a clinical intervention, we enhance mucus clearance and respiratory function in cystic fibrosis patients because physical activity mimics clinical airway clearance techniques and improves overall lung health.
- Family-Centered, Holistic Support Modelmethodology: family-centered_careBy integrating medical, emotional, and logistical support within a family-centered framework, we improve well-being and reduce isolation for cystic fibrosis families because comprehensive care addressing psychosocial and practical needs increases treatment adherence and resilience.
- Medical Partnerships for Targeted Service Developmentmethodology: medical_partnershipsBy collaborating with medical researchers and clinicians, we develop and deliver evidence-based tools and services for cystic fibrosis because clinical alignment ensures relevance, safety, and integration with standard care protocols.
- Therapeutic Coastal Environment as Clinical Interventionmethodology: therapeutic_environmentBy situating respite care in high-salt, pollution-free coastal environments, we improve lung function and reduce respiratory complications in children with cystic fibrosis because salt aerosols and clean air support natural airway clearance and reduce mucus viscosity.