Our Vision, Mission & Value
Our Vision
A world without Sudden Unexplained Death in Childhood (SUDC).
Our Mission
Raise awareness, fund research, and serve those affected by SUDC.
Our Value
We are the only organization worldwide whose purpose is to raise awareness, fund research, and serve those affected by SUDC. SUDC is the fifth leading category of death in children ages one to four, yet SUDC receives no public funding. The SUDC Foundation provides all services at no cost to families.
Our History
Dr. Henry Krous receiving an award from Laura Gould for his dedication to SUDC at the SUDC program’s 10th anniversary cruise around NYC.
In 1999, a small group of parents affected by unexplained toddler death attended a presentation at the SIDS Alliance national convention in Atlanta, GA.
The presentation by Dr. Henry Krous was entitled “Post-Infancy SIDS-Is it on the rise?” Following the presentation, Dr. Krous agreed to review the children’s records of the families in attendance to learn more about them. Over the following two years, more families who had experienced an unexplained childhood death were identified and Dr. Henry Krous and Laura Gould cofounded the San Diego SUDC Research Project which studied cases of SUDC from 2001- 2012. In 2001, Gould joined Chelsea Hilbert, both SUDC mothers, to create the SUDC Program under the CJ Foundation for SIDS. With each year, the program grew to provide more services to more families with greater needs. In 2014, Gould joined Lorri Caffrey, another SUDC mother, along with Dr. Orrin Devinsky and Jim Lintott to establish the SUDC Foundation as an independent nonprofit organization. The SUDC Foundation was created to continue the mission of the Program, as well as meet the current needs of those touched by Sudden Unexplained Death in Childhood.
Our Core Values
The SUDC Foundation’s strategic plan for 2024-2027 is a comprehensive roadmap and a promise to our community. We are taking deliberate and meaningful steps toward a world where no family has to endure the tragic loss of their child. With the collective dedication of our Board of Directors, staff, and community partners; we are confident that we will continue to make a significant impact bringing us closer to a future free of SUDC.
Our Strategic Plan
The Foundation made crucial advances by engaging in a Diversity, Equity, and Inclusion (DEI) workshop prior to developing our strategic plan. Led by Agnes Meneses and Carol Xu of Meneses Consulting, our Board of Directors and staff engaged in a workshop that identified and reinforced the core values that underpin our work.
With these principles of equity and inclusion at the core of our strategy, Greg Talley with Talley Management led the Board and senior staff to identify the five strategic priorities that will shape our efforts in the years moving forward.
Families First is at the center of all the SUDC Foundation’s work, and at the heart of our strategic plan. In response to our family needs, over the next three years, the SUDC Foundations is committed to expand and deepen our impact on those we serve. All board and staff will contribute to our shared effort to deliver that impact. Success in any one of these priorities is deeply interconnected with the other priorities.
Strive for Organizational Excellence
We will strengthen our governance and operations to ensure alignment with our culture and values to enhance transparency, accountability, and operational efficiency.
Achieve Financial Endurance
To secure our future, we will establish long-term financial stability to effectively serve the evolving needs of our families as well as the professional and research communities, both in the present and into the future. We will build a robust and enduring financial pipeline, aggressively pursue grants and unrestricted revenue streams, as well as expand our staff, ensuring we can continue to meet the needs of families and researchers alike.
Acceleration Innovation & Partnerships in SUDC Research
As a global leader in SUDC research, we will enhance accessibility and funding opportunities to accelerate SUDC research. By establishing a Scientific Grants Review Committee, we will bring together multidisciplinary experts to guide an intentional research agenda and ensure that SUDC remains at the forefront of scientific discovery. Our commitment to excellence and innovation will be reinforced by our dedication to building strong, collaborative relationships with academic institutions, medical professionals, and other research organizations to accelerate the pace of discovery, moving us closer to a future where SUDC is fully understood and preventable.
Enhance & Expand Support & Advocacy Services
Enhancing the quality of support services for the community we serve, is a top priority. We are committed to providing exceptional care that fosters a sense of belonging and empower individuals with the skills to thrive both mentally and physically. We will continue to expand our offerings, ensuring lower-barrier, trauma-informed, person-centered care is available at no cost to our families. A new initiative is the Postmortem Genetic Testing Program, which not only provides families with a continuum of care and opportunities to participate in research, but also offers significant benefits to medical examiners, coroners, and other medical professionals. By removing barriers to accessing postmortem genetic testing, the initiative ensures that both professionals and families have the necessary resources for thorough and comprehensive investigations. This initiative strengthens collaboration between the SUDC Foundation and the medical community, ultimately enhancing the quality of care and investigation outcomes.
Advance Advocacy & Awareness
Building awareness and advocacy are essential to our mission. We will advance public policy on SUDC to ensure that the needs of affected families are heard and addressed at all levels. This includes advocating for increased research funding, public education, and the inclusion of SUDC in local, state, and national health priorities. We aim to equip healthcare providers with the knowledge and tools to address SUDC in their practices while striving for standardized protocols to better investigate and understand these tragedies. Our comprehensive advocacy efforts will combine grassroots mobilization, strategic alliances, and targeted campaigns to drive meaningful awareness and policy change.
Our Major Goals
ESTABLISH A SCIENTIFIC GRANTS REVIEW COMMITTEE to guide research priorities; build partnerships with academic institutions, medical professionals, and research organizations to drive discovery and innovation.
LAUNCH THE POSTMORTEM GENETIC TESTING PROGRAM to provide comprehensive care and research opportunities; enhance collaboration with medical professionals and to access the latest advanced tools and resources for the most thorough investigation possible.
SECURE FUNDING FROM EXTERNAL SOURCES to financially support 50% of Family Services programs and general operating funds.
PROVIDE PRO BONO CLINICAL SERVICES to ensure that every registered SUDC Foundation Family Member receives access to high-quality, compassionate, person-centered, trauma informed grief support services at no cost.
IDENTIFY AND IMPLEMENT LEGISLATIVE ACTION PLAN to influence public policy to address the needs of affected families; advocate for increased research funding and public education; promote standardized protocols for investigating SUDC; engage in grassroots mobilization and strategic campaigns to drive policy change.