The SUDC Foundation
An Answer when there's no explanation
Programs and results
What we aim to solve
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
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
Public Awareness and Advocacy
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.
Research
The SUDC Foundation funds research crucial to one day find answers and ultimately prevent these tragic deaths.
Where we work
Affiliations & memberships
SUDC UK 2022
Videos
Our results
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
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
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Connect with nonprofit leaders
SubscribeBuild 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 directorsas of 10/02/2023
Bobby Jenkins
The SUDC Foundation
Term: 2020 -
Lorri L Caffrey
Development Manager
James Lintott
Foundation management advisor
Bobby Jenkins
Business Owner
Matthew Polenzani
Professional musician
Laura Gould
Scientist
Erin Bowan
Pediatrician
Julia Burgess
Vivienne Joy Foundation
Steve Myers
Financial Advisor
Carson McLean
Regional Director
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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 ? Yes -
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? Yes
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
No data
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 10/02/2023GuideStar 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
- 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.
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We have community representation at the board level, either on the board itself or through a community advisory board.
- 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.