named programs · 5 · from sources
what they call their work
CDH Resources
Provides honest and transparent information on options for families upon receiving a CDH diagnosis, including a document created with clinical leaders from pediatric centers of excellence.
CDH-specific research grants
Enabling the medical research community to find the cause of CDH and to develop new, innovative methods for intervention or treatment.
Continuing education scholarship grants
Providing CDH survivors and/or their families with opportunities to excel and achieve through continuing education.
Financial assistance for CDH community
Supporting members of the CDH community in need of financial assistance to ensure proper care for a child diagnosed with CDH.
Tiny Hero Partnership
Partnership with Tiny Hero, another non-profit organization, to provide support and education materials for families dealing with a CDH diagnosis, including a questionnaire for doctors.
activities · 4 clusters
what they do
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Pediatric & Specialty Disease Research Funding 8 activities
- Development and Distribution of CDH Educational MaterialsCollaborates with clinical leaders from pediatric centers of excellence to publish informational materials for families facing a CDH diagnosis, supporting informed decision-making and care.
- Funding CDH ResearchProvides research grants to support medical research aimed at identifying the causes of Congenital Diaphragmatic Hernia (CDH) and developing new interventions or treatments, including funding for research proposals in the field.
- Funding Congenital Diaphragmatic Hernia (CDH) ResearchRaises and provides research grants to support medical research focused on identifying the causes of CDH and developing new interventions or treatments.
- Funding Congenital Diaphragmatic Hernia (CDH) ResearchRaises and provides research grants to support medical research focused on identifying the causes of CDH and developing new interventions or treatments.
- Funding Congenital Diaphragmatic Hernia (CDH) ResearchThe foundation raises and provides research grants to support medical research focused on identifying the causes of CDH and developing new interventions or treatments. Over $2,000,000 has been raised for CDH research and family support.
- Publishing Informational Material for CDH FamiliesCollaborates with clinical leaders from pediatric centers of excellence to publish informational material for families facing a congenital diaphragmatic hernia (CDH) diagnosis.
- Publishing Informational Material for CDH FamiliesThe foundation collaborates with clinical leaders from pediatric centers of excellence to publish informational material for families facing a congenital diaphragmatic hernia (CDH) diagnosis.
- Publishing Informational Material for CDH FamiliesCollaborates with clinical leaders from pediatric centers of excellence to publish informational material for families facing a congenital diaphragmatic hernia (CDH) diagnosis.
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Financial Assistance for Families 4 activities
- Direct Financial Assistance for CDH-Affected FamiliesProvides financial grants to families dealing with a CDH diagnosis to cover medical care expenses, travel, and living arrangements, with individual grants up to $500.00.
- Providing Financial Assistance to CDH FamiliesThe foundation offers financial assistance and grants up to $500 to members of the CDH community to help cover medical care expenses, travel, and living arrangements, ensuring access to necessary care for children diagnosed with CDH.
- Providing Financial Assistance to CDH FamiliesOffers financial assistance and grants up to $500.00 to families affected by CDH to help cover medical care expenses, travel, and living arrangements, ensuring access to necessary care.
- Providing Financial Assistance to CDH FamiliesOffers financial assistance and grants up to $500.00 to members of the CDH community to help cover medical care expenses, travel, and living arrangements for children diagnosed with CDH.
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Targeted Scholarships for Specific Populations 4 activities
- Fore Hope Scholarship ProgramOffers continuing education scholarship grants to CDH survivors and their families, awarding scholarships of at least $4,000; the application window for the program opens in April 2026.
- Offering Continuing Education ScholarshipsOperates the Fore Hope Scholarship program, providing continuing education scholarship grants at or above $4,000 to CDH survivors and their families for academic or professional advancement.
- Offering Continuing Education ScholarshipsThe foundation operates the Fore Hope Scholarship program, providing continuing education scholarship grants at or above $4,000 to CDH survivors and their families to support academic or professional advancement.
- Offering Continuing Education ScholarshipsOperates the Fore Hope Scholarship program, providing continuing education scholarship grants at or above $4,000 to CDH survivors and their families for academic or professional advancement.
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Uncategorized 1 activity
- Fundraising EventsOrganizes annual fundraising events such as the Fore Hadley Golf Classic to support CDH research and family support initiatives, having raised over $2,000,000 to date.
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financials · form 990PF · fy2022
the money
revenue
Total revenue$204K
Contributions & grants——
Program service revenue——
Investment income$114K56%
Other revenue$64K
expenses
Total expenses$92K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits$50K
Grants paid out$146K
balance sheet
Total assets$3.00M
Cash—
Investments—
Liabilities—
Net assets$3.00M
2 years on record · 2021–2022 · YoY revenue +2.4%
leadership · form 990 part vii · fy2022
who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| LARRY DEMARCO | TRUSTEE | 2 | $50K |
board members · 1
- GEORGE DEMARCO — TRUSTEE
relationships · 7
who they work with
- Children's Healthcare of Atlanta Partner — Partner hospital receiving funding, including for ECMO simulation training
- Children's Healthcare of Philadelphia Partner — Partner hospital supporting CDH research and care, including work with Dr. Hedrick
- Children's Hospital Neonatal Consortium Partner — Partner organization receiving support for CDH-related pain research
- DHREAMS at Columbia University Partner — Research partner focused on advancing CDH therapies and outcomes
- Johns Hopkins All Children's Hospital Partner — Partner hospital receiving funding for CDH care and research initiatives
- LocumTenens Partner — Sponsored the 10th Annual Fore Hadley Golf Classic.
- Tiny Hero Partner — Partnered to provide families with a questionnaire for selecting a CDH surgeon or program and access to personal experiences from CDH survivors.