What SUDC Foundation does

The SUDC Foundation is a 501(c)(3) nonprofit headquartered in Roseland, New Jersey, dedicated to Sudden Unexplained Death in Childhood — the sudden and unexpected death of a child 12 months and older that remains unexplained after a thorough case investigation. The foundation funds biomedical research into SUDC causes, operates the SUDC Registry and Research Collaborative (SUDCRRC) with NYU Langone, and delivers support services, advocacy, and community retreats to bereaved families. Its core products are research grant disbursements, a curated longitudinal registry and tissue repository, postmortem genetic testing access through GeneDx, and HiFi genome sequencing studies through PacBio in partnership with NYU Langone, Boston Children's Hospital, and University of Washington/Seattle Children's.

The foundation's business model is donation-driven rather than commercial: revenue is generated through individual giving, corporate contributions, planned giving, peer-to-peer events including the 2026 TCS New York City Marathon charity partnership, and, as of 2026, federal R01 research funding. Research output is delivered extramurally through grantee institutions; family services and community programs are delivered directly. The foundation has cumulatively committed more than $3M to research, with recent annual research disbursements in the high-six to low-seven-figure range, and operates an affiliated UK entity (SUDC UK) launched in 2018 to extend its reach transatlantically. Governance is currently led by President Julia Burgess and CEO Tina Lee, following the transition from co-founder Laura Gould Crandall.

Name

SUDC Foundation

Legal name

SUDC Foundation

Website

https://sudc.org

Company type

Private

Founded year

2005

Operating status

Operating

Headcount range

1–10 employees

Short description

The SUDC Foundation is a 501(c)(3) nonprofit that funds biomedical research and provides support services for families affected by Sudden Unexplained Death in Childhood, operating the SUDC Registry with NYU Langone and partnering with GeneDx, PacBio, Boston Children's, and University of Washington.

Ownership category

akta.pro rank

Product category

Nonprofit Health Advocacy and Bereavement Support

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Bereavement support services
• Medical research funding
• Genetic testing programs
• Child health advocacy
• Nonprofit health organization

Headquarters

HQ city

Roseland

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Technology or R&D, Personnel, Operations, Marketing or Sales

Revenue model

1. Individual Donations: The SUDC Foundation relies on charitable donations from individuals to fund its mission of raising awareness, funding research, and serving families affected by SUDC. Donations can be made as one-time gifts or monthly recurring contributions.
2. Corporate Giving and Workplace Giving: Corporate partners and employers contribute through corporate giving programs, workplace giving campaigns, and matching gift programs to support SUDC Foundation programs.
3. Peer-to-Peer and Event Fundraising: Community members organize and host fundraising events including 5K runs, memorial events, and peer-to-peer campaigns. The foundation also serves as an official charity partner for events like the TCS NYC Marathon.
4. Planned Giving: The foundation accepts planned giving and legacy donations as part of its legacy planned giving program.

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels9 records

Core offering

The SUDC Foundation provides free bereavement support, peer connections, grief resources, and medical care guidance to families affected by Sudden Unexplained Death in Childhood (SUDC). It funds scientific research into SUDC causes through investigator-initiated grants, discovery grants, and boost grants, and operates the SUDC Registry and Research Collaborative (SUDCRRC) partnered with NYU Langone. The organization also delivers no-cost postmortem genetic testing through GeneDx, advocates for federal and state legislation, and convenes an annual community retreat.

Product overview

The SUDC Foundation is a registered 501(c)(3) nonprofit organization serving as the leading organization for families and professionals affected by Sudden Unexplained Death in Childhood. The foundation offers a coordinated portfolio of services including: SUDC Awareness Programs (Ambassador and Teen Ambassador programs, annual awareness campaigns), Grief Support Services (Peer Connections, Pathways to Healing workshops, medical guidance), SUDC Research Funding (Investigator Initiated Grants, Discovery Grants, Boost Grants supporting genetics, neurology, and other fields), the SUDC Registry and Research Collaborative (SUDCRRC) partnered with NYU Langone, a Postmortem Genetic Testing Initiative (partnered with GeneDx), an annual Community Retreat Program, The Microscope educational blog, downloadable Educational Literature and Brochures, Legislative Advocacy initiatives, and an online Donation and Fundraising Platform. All services are provided at no cost to those served.

Differentiator

Problem solved

Functional benefit

Products and services

• SUDC Awareness Programs Educational outreach initiatives including the Ambassador Program, Teen Ambassador Program, and annual SUDC Awareness Month campaigns to raise public understanding of Sudden Unexplained Death in Childhood. Targeted at communities, advocates, and policymakers.
• Grief Support Services Comprehensive bereavement support including the Peer Connections Program, Pathways to Healing Grief Coping Skills Workshop, medical care guidance, and educational videos for families affected by SUDC. Delivered at no cost to bereaved families.
• SUDC Research Funding Program Grant programs funding scientific research into SUDC causes, including Investigator Initiated Grants, Discovery Grants (pilot studies), and Boost Grants to extend existing research, supporting genetics, neurology, cardiology, and other fields. Awarded to academic and clinical investigators.
• SUDC Registry and Research Collaborative (SUDCRRC) Collaborative research initiative partnered with NYU Langone Health to collect, register, and analyze SUDC cases, providing the field's only dedicated registry infrastructure for advancing scientific understanding of unexplained childhood deaths.
• Postmortem Genetic Testing Initiative No-cost postmortem genetic testing program for families affected by SUDC, launched in partnership with GeneDx in October 2025, with PacBio HiFi long-read sequencing adopted as the first-line approach to detect structural variants and variants in repetitive regions missed by standard testing.
• SUDC Foundation Community Retreat Annual in-person retreat providing grief support, therapeutic workshops, art therapy, and community connection for bereaved families affected by SUDC. Offered free of charge; the 2026 retreat is scheduled in Bloomington, MN.
• Legislative Advocacy Program

Quantifiable outcome

• 418 children affected by SUDC in 2024 (CDC data)
• +2 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

13 partnerships are on record, tiered core and minor.

• Robert's Program at Boston Children's HospitalcoreStrategic or Co-development Partner · 10 February 2026Ongoing collaboration with the Robert's Program on Sudden Unexpected Death in Pediatrics, including a $508,668 Boost Grant to support neuropathological assessment in SUDC cases.
• PacBiocoreStrategic or Co-development Partner · 12 January 2026Partnership with PacBio to adopt HiFi (highly accurate long-read) genome sequencing as the first-line sequencing approach to investigate SUDC cases, enabling detection of structural variants and variants in repetitive regions.
• GeneDxcoreStrategic or Co-development Partner · 15 October 2025Partnership with GeneDx to launch a postmortem genetic testing initiative, providing free genetic testing services to families affected by SUDC to help identify potential genetic causes of sudden unexplained death in childhood.
• University of Washington School of MedicinecoreStrategic or Co-development PartnerResearch partnership with researchers including Danny Miller, MD, PhD and Alexandra Keefe, MD, PhD at University of Washington School of Medicine and Seattle Children's Hospital for SUDC genetic and genomic research.
• Seattle Children's HospitalcoreStrategic or Co-development PartnerClinical research partnership with Seattle Children's Hospital for SUDC research including genetic studies and neurological investigation.
• NYU Langone Health / SUDCRRCcoreStrategic or Co-development PartnerSUDC Registry and Research Collaborative (SUDCRRC) hosted at NYU Langone, collecting and analyzing SUDC cases to advance scientific understanding through collaborative research.
• Jan-Marino Ramirez, PhDcoreStrategic or Co-development PartnerPartnership with Jan-Marino Ramirez, PhD, Professor of Neurological Surgery and Pediatrics at University of Washington School of Medicine and Director of Norcliffe Center for Integrative Brain Research at Seattle Children's Research Institute, for new study launching February 2025.
• Brighter Days Family Grief CentercoreStrategic or Co-development PartnerPartner organization for the 2026 SUDC Foundation Community Retreat, providing grief support sessions and professional facilitation for bereaved families.
• ChildLoss FoundationcoreStrategic or Co-development PartnerSponsor and partner for the 2026 SUDC Foundation Community Retreat, providing bereavement professionals and art therapy sessions.
• Vivienne's JoyminorOthersPremier sponsor of the 2026 SUDC Foundation Community Retreat.
• Rosie BeaganminorOthersPremier sponsor of the 2026 SUDC Foundation Community Retreat.
• American Academy of Pediatrics (AAP)minorGTM or Marketing PartnerProfessional organization partner endorsing SUDC Foundation initiatives and research, with joint advocacy for child health.
• National Association of Medical Examiners (NAME)minorGTM or Marketing PartnerProfessional organization partner for improving death investigations and supporting medical examiner resources for SUDC cases.

Scale indicators5 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella organization for rare diseases that operates a broader research-funding and policy-advocacy program covering many disease-specific nonprofits including those serving small pediatric populations. Relevant as a broader-incumbent peer in the rare pediatric disease space.

Direct peers

• Parent Project Muscular Dystrophy: Disease-specific nonprofit funding research and supporting families affected by Duchenne muscular dystrophy. Mirrors the SUDC Foundation's combination of family services, research funding, registry operations, and federal advocacy.
• Cribs for Kids: Nonprofit focused on reducing infant sleep-related deaths through education, safe-sleep products, and SUID awareness. Comparable to the SUDC Foundation in its focus on sudden unexplained infant/childhood mortality and family-facing awareness.
• MISS Foundation: Nonprofit supporting families after the death of a child regardless of cause, with peer support, counseling, and advocacy. Operates a grief-support model parallel to the SUDC Foundation's family services.
• Compassionate Friends: National nonprofit providing peer support and resources to bereaved parents, siblings, and grandparents after the death of a child. Directly comparable to the SUDC Foundation's Peer Connections Program and grief-support service line.
• SUDEP Institute: Program dedicated to Sudden Unexpected Death in Epilepsy (SUDEP), addressing another category of unexplained deaths. Operates a research registry, funds research, and supports bereaved families using a structurally analogous model to the SUDC Foundation.
• Children's Tumor Foundation: Rare pediatric disease nonprofit funding research (including investigator-initiated and drug-discovery grants) and supporting affected families. Directly comparable grantmaking structure and disease-specific research-funding approach.
• Alex's Lemonade Stand Foundation: Pediatric cancer research and family-support nonprofit funding investigator-initiated grants and operating a research registry. Highly comparable funding model (Discovery Grants, Boost Grants) and family-services portfolio.
• First Candle: Leading nonprofit focused on sudden unexpected infant death (SUID) and SIDS, the closest categorical neighbor to SUDC. Directly comparable mission of supporting bereaved families, funding research into unexplained infant/childhood deaths, and advocating for federal data improvements.
• American SIDS Institute: Disease-specific nonprofit supporting families affected by SIDS and funding related research. Closely parallels the SUDC Foundation's model of grief support, awareness, and research funding for unexplained childhood deaths.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/SUDCFoundation
• Instagraminstagram.com/sudcfoundation
• LinkedInlinkedin.com/company/the-sudc-foundation

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Subsidiaries1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about SUDC Foundation