The SUDC Foundation

An Answer when there's no explanation

Roseland, NJ   |  http://www.sudc.org

Mission

Sudden Unexplained Death in Childhood (SUDC) is a category of death in children between the ages of 1 and 18 that remains unexplained after a thorough investigation, including an autopsy. Most often, a seemingly healthy child goes to sleep and never wakes up. At this time, we do not know what causes SUDC, how to predict it or how to prevent it. A medical examiner or coroner could rule a child’s death SUDC when s/he completes a thorough evaluation and finds no other cause of death. The SUDC Foundation envisions a world where no more children are lost to Sudden Unexplained Death in Childhood. The SUDC Foundation is the only organization worldwide whose purpose is to promote awareness, advocate for research and support those affected by SUDC.

Ruling year info

2014

President & Cofounder

Ms. Laura Gould, MA

Main address

101 Eisenhower Pkwy

Roseland, NJ 07068-1032 USA

Show more contact info

EIN

46-5008779

NTEE code info

Fund Raising and/or Fund Distribution (E12)

Public Foundations (T30)

Fund Raising and/or Fund Distribution (W12)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2020, 2019 and 2018.
Register now

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Sudden Unexplained Death in Childhood (SUDC) is the sudden and unexpected death of a child 12 months and older which remains unexplained after a thorough case investigation is conducted. This must include; examination of the death scene, performance of a complete autopsy, and a review of the child and family's medical history. SUDC is a category of death that currently eludes our scientific understanding today. We do not know of any way to reduce the risk of SUDC. It is unpredictable and unpreventable at this time. Based on the above statistics, released in 2017 by the Centers for Disease Control and Prevention, National Center for Health Statistics 445 children were affected by sudden unexplained death in 2016, occurring in: 236 children ages of 1-4 years, 30 children ages of 5-9 years, 37 children ages of 10-14 years and 142 teens ages of 15-19 years.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Support Services for Families

The SUDC Foundation provides services that meet the needs of families affected by the sudden death of a child, including:

Individualized case advocacy to assist families with navigating the death investigation process

Personalized support by a Social Worker

Unique online email support groups
Peer Support Programs matching trained family volunteers and newly bereaved families

Private Family Directory

Resources to help siblings and grandparents
Grief support articles and resources mailed to families with emphasis on the first year after their child died

Family medical screening information created by the SUDC Medical Advisory Board

Planning support for those wishing to host an event

Memorial and event planning websites at no cost

SUDC newsletters and e-news to keep families informed

SUDC research opportunities

Population(s) Served
Adults
Families

The SUDC Foundation advocates for all things related to SUDC including but not limited to raising public awareness via The SUDC Foundation's website, newsletter, printable materials and enewsletter as well as various online social media campaigns. We also attend/exhibit at conferences to educate professionals on SUDC and provide any resources available. The SUDC Foundation provides individualized case advocacy to assist families with the death investigation process and beyond in addition to coordinating banking of their child's DNA for possible future research.

Population(s) Served
Parents
Emergency responders

The SUDC Foundation funds research crucial to one day find answers and ultimately prevent these tragic deaths.

Population(s) Served
Children and youth
Parents

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of rallies/events/conferences/lectures held to further mission

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, Children and youth

Related Program

Public Awareness and Advocacy

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Includes events hosted on behalf of and by the SUDC Foundation. Private Foundation and community events raising funds and awareness to directly support the mission of the SUDC Foundation.

Number of new donors

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth

Related Program

Research

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of research studies conducted

This metric is no longer tracked.
Totals By Year
Population(s) Served

Infants and toddlers, Adolescents

Related Program

Research

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

To increase the understanding of the characteristics, circumstances, medical histories and pathologies of children from ages 11 months through 18 years who have died suddenly and unexpectedly.

Dollars donated for specific programs or services

This metric is no longer tracked.
Totals By Year
Population(s) Served

Women and girls, Men and boys

Related Program

Research

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Number of new families who contact us to receive family service support

This metric is no longer tracked.
Totals By Year
Population(s) Served

Women and girls, Men and boys

Related Program

Support Services for Families

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Provide grants for and conduct research that will further our understanding of the cause(s) and ways to prevent SUDC.
Support 800 families in 17 countries, provide comprehensive care from a dedicated MSW and cultivates a community of support for bereaved families. Helps families navigate the difficult and often confusing investigation into their child's death by being a liaison between families and the medical examiner or coroner. It also assists families in accessing research and DNA banking services which could lead to answers on what may have happened to their child.
Resources to help medical examiners and coroners, pediatricians and other doctors care for and communicate with families experiencing the sudden, unexpected and unexplained loss of a child.
Supports policy to ensure comprehensive and standardized death investigations. Advocates for fair treatment of and appropriate medical care for families and thorough data collection to improve our understanding of SUDC.

In May 2017, the SUDC Foundation initiated a five-year strategic planning process. After months of stakeholder interviews and data analysis, the members of the Board of Directors and staff of the SUDC Foundation met in September 2017 to clarify the Foundation’s vision, mission and value proposition, develop the organization’s priority objectives over the next five years and develop a strategy to accomplish them. Representatives from Sterling Foundation Management, the Foundation’s strategic management partner, led the retreat. Below is an
overview of decisions made.

STRATEGIC OBJECTIVE ONE: Improve advocacy efforts
STRATEGIC OBJECTIVE TWO: Increase SUDC research
STRATEGIC OBJECTIVE THREE: Enhance family services
STRATEGIC OBJECTIVE FOUR: Increase awareness initiatives
STRATEGIC OBJECTIVE FIVE: Strengthen professional relationships
STRATEGIC OBJECTIVE SIX: Diversify donor sources
STRATEGIC OBJECTIVE SEVEN: Improve organizational development

The SUDC Foundation is the only organization worldwide whose purpose is to promote awareness, advocate for research and support those affected by SUDC, all services are provided at no cost to families. The Foundation accomplishes its strategic goals through the following capabilities: *bereavement support provided to 800 families through licensed clinical social workers. *SUDC Registry and Research Collaborative to assist families and the medicolegal death investigation community when these tragedies occur, the SUDCRRC is comprised of world renowned medical professionals, physicians, researchers and pathologists. *Directly support legislative policy to strengthen existing efforts to better understand SUDC, facilitate data collection and analysis to improve prevention efforts. *A strong development team with appropriate skill sets to successfully execute a comprehensive fundraising plan. A dedicated Board of Directors comprised of financial, medical and business professionals.

Supported Scarlett’s Sunshine Act (H.R. 6931/ S 3521) to strengthen existing efforts to better understand SUID and SUDC, facilitate data collection and analysis to improve prevention efforts, and support children and families.

Launched Ambassador formal volunteer program to empower SUDC families and other members of the SUDC community to promote awareness of SUDC and support the mission of the Foundation.

Extended SUDC’s reach and support to families through the 2018 Summer Podcast club​.

Participated in NAME 2018 exhibit, led 2 scientific presentations to raise awareness among medical examiners, coroners, death investigators, medical students, pediatricians and other related professionals​.

Implemented stakeholder survey to spearhead campaign to increase referral rates from medical death investigation professionals and pediatricians to the SUDC Foundation and the SUDCRRC.

Approved as new organization to receive employee contributions from the 2018 Combined Federal Campaign.

Financials

The SUDC Foundation
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more about GuideStar Pro.

Operations

The people, governance practices, and partners that make the organization tick.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

The SUDC Foundation

Board of directors
as of 10/18/2021
SOURCE: Self-reported by organization
Board chair

Bobby Jenkins

The SUDC Foundation

Term: 2020 -

Lorri Caffrey

Development Manager

James Lintott

Foundation management advisor

Bobby Jenkins

Business Owner

Matthew Polenzani

Professional musician

Laura Crandall

Scientist

Erin Bowan

Pediatrician

Julia Burgess

Vivienne Joy Foundation

Steve Myers

Financial Advisor

Carson McLean

Regional Director

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 10/18/2021,

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 11/02/2020

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.