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.