Mission & History

Our Mission

The Sudden Unexplained Death In Childhood (SUDC) Foundation is tasked with providing a centralized resource for information, research, support and advocacy. It serves families and professionals affected by the tragedy of SUDC, and promotes awareness of SUDC in communities.

Sudden Unexplained Death in Childhood (SUDC) is the sudden and unexpected death of a child twelve 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 whose underlying cause(s) elude our understanding today.

The SUDC Foundation collects and distributes information regarding SUDC as it becomes available. It works collaboratively with families and professionals to address the many needs following these tragedies.

The limited research, in the area of SUDC, contributes to the poor awareness and understanding of these deaths. The SUDC Foundation supports and encourages research that may lead to determining the cause(s) and the prevention of these childhood deaths.

The SUDC Foundation understands that families may grieve in isolation, without information, resources or the knowledge that other families exist with a similar loss. It aims to prevent this by offering no cost support services that include a peer support program, an online support community, individual support calls, Skype chats and more. Our Support Services team includes licensed clinical social workers.

The SUDC Foundation collects and supplies relevant information regarding sudden unexpected deaths occurring in childhood.

Through current technology, social media, publications, health fairs, related conventions and events, the Foundation provides a greater, and more accurate understanding of SUDC.

So many difficult issues surround sudden unexpected/unexplained deaths in childhood.The SUDC Foundation strives to address them. We are very concerned that families receive fair and sensitive treatment. Lasting wounds can be created when families are faced with undue stress while they are striving to cope with the all-consuming grief and trauma that follows the death of a beloved child.

It benefits everyone to improve the postmortem investigations of all children who die in an unexpected manner. Comprehensive and standardized death investigations can provide the most accurate cause of death. This will help develop accurate statistics, provide a database to guide research, and give parents a peace of mind.

Funds donated to The SUDC Foundation are tax-deductible, to the extent allowable by law, and are used to support out mission which includes funding research crucial to uncovering the mystery of SUDC, providing support to families worldwide in their time of need and beyond, and raising much-needed awareness.

History

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 Crandall cofounded the San Diego SUDC Research Project which studied cses of SUDC from 2001- 2012.

Laura Crandall, a Neurological Physical Therapist by training, and Chelsea Hilbert, an ER Social Worker by training, brainstormed together to create the mission of The Sudden Unexplained Death In Childhood Program. A proposal was submitted to the national non-profit, the CJ Foundation for SIDS, to support this new program and it was created in the fall of 2001. The SUDC Program was created to be a centralized resource for Sudden Unexplained Death In Childhood providing information, support, advocacy and research.

With each year, the program grew to provide more services to more families with greater needs. In 2014, Laura Crandall and Lorri Caffrey, both SUDC parents, along with Dr Orrin Devinsky and Jim Lintott founded the SUDC Foundation as an independent non-profit health 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.

One of the greatest needs for families, beyond support services, was access to research opportunities. Partnering with NYU Langone Medical Center, under the leadership of Dr Orrin Devinsky, the SUDC Registry and Research Collaborative was created in 2014.

The Foundation also expanded its efforts through advocacy and helped drive the successful passage of the Sudden Unexpected Death Data Enhancement Act that was signed into law by President Obama in December 2014. This Act is the first federal recognition of SUDC in the USA.