CEDAR GROVE, N.J. — The Sudden Unexplained Death in Childhood (SUDC) Foundation released a powerful new documentary, “Love Beyond Reason,” that offers a snapshot of the unique challenges and unanswered questions that follow a sudden, unexpected and unexplained loss of a child.
Sudden Unexplained Death in Childhood (SUDC) is a category of death in children over the age of one year which remains unexplained after a thorough investigation and autopsy. Most often, SUDC occurs in otherwise healthy children during sleep. At least 400 children are lost to SUDC in the United States every year.
“Love Beyond Reason” depicts the challenges the medical community faces as it tries to understand this classification of death and the heartache of parents and families who have experienced the sudden loss of a thriving child with no medical cause or explanation.
“This documentary powerfully presents the human side of one of the most under-recognized medical tragedies of our time,” said Orrin Devinsky, M.D., of the New York University Langone School of Medicine and the Principal Investigator of the SUDC Registry and Research Collaborative (SUDCRRC).
The film also highlights the chronically under-served needs of families affected by SUDC, including a lack research, support and funding. While it is the fifth leading category of death among children ages one to four, SUDC has received no public funding to date.
“Unfortunately, sudden deaths of children do happen,” said Laura Gould Crandall, Executive Director and Co-Founder of the SUDC Foundation. “For far too long, SUDC has not been addressed well by the medical community in terms of care for the families affected and pursuing an understanding of a cause and a way to prevent these deaths. We have to change that.”
Scenes for “Love Beyond Reason” were shot at the Understanding Sudden Unexplained Death in Childhood Conference held in New York City, N.Y., on May 1, 2017. The conference was the first multidisciplinary medical conference on SUDC which featured critical research updates and best practices from the fields of epidemiology, pathology, genetics, cardiology, neurology and palliative care. Over 225 attendees joined from 35 U.S. states and five countries.
The conference also offered the rare opportunity for SUDC families to connect in person with others who have suffered similar tragedies, which is also featured in the film.
“This film cuts to the heart of what SUDC is all about,” said Bobby Jenkins, a grandfather of a child lost to SUDC and Board Member of the SUDC Foundation. “From the first-ever conference for researchers and parents, we are able to tell the story of an entire classification of children who die without answers and receives no government research support. We see the families brought together for the first time and experience the tears and loss, but also the hope that someday we will have the resources to find out what happened to these wonderful children. Thanks so much to the SUDC Foundation for bringing everyone together and telling this important story.”
“Like many, I was unaware of what SUDC really was before working on this film. It was through working on this conference that I began to understand the mystery of SUDC, and the strength of the families enduring such a loss,” said Austen Deery, the director of the film. “The love and community I felt and was a part of while filming this documentary was special. To have families open up about these tragedies and speak freely about what their experience has been like was nothing short of heroic and deserves so much more than what I was able to provide as a filmmaker.
“So I say thank you to all those who were a part of making this conference so powerful, and to the entire team at the SUDC Foundation whose support and effort does not go unnoticed, and will not stop until this tragic phenomenon is put to rest.”
To learn more about SUDC and the SUDC Foundation, and to watch “Love Beyond Reason,” please visit https://sudc.org/.
About the SUDC Foundation:
The SUDC Foundation is the only organization worldwide whose purpose is to promote awareness, advocate for research and support those affected by SUDC. The SUDC Foundation provides all services at no cost to families.
About the SUDCRRC:
The SUDC Registry and Research Collaborative (SUDCRRC) will assist families and the medicolegal death investigation community when these tragedies occur. The purpose is 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, and in some instances, without explanation.
The SUDC Registry and Research Collaborative will analyze cases of sudden unexpected deaths in these children to understand risk factors and causes, and develop preventative measures. By bringing together these rare cases, we hope to support grieving families with a greater understanding of their child’s death and support medical research efforts into all causes of Sudden Unexplained Death in Childhood.
Media Contact:
Elizabeth Milliken
Of SUDC Foundation
Cell: 973-459-1092
elizabeth@sudc.org
https://sudc.org/
*IMAGE for media: Send2Press.com/300dpi/17-0918s2p-love-beyond-reason-300dpi.jpg
Twitter: @SUDC #LoveBeyondReason
Related link: https://sudc.org/
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