Author Archives: SUDC Foundation

26 State Proclamations Kick Off Awareness Month for Unexplained Childhood Deaths

ROSELAND, N.J. /ScoopCloud/ -- The Sudden Unexplained Death in Childhood (SUDC) Foundation thanks Arkansas, Alabama, Arizona, Connecticut, Georgia, Hawaii, Illinois, Indiana, Maine, Massachusetts, Mississippi, Missouri, Montana, Nevada, New Hampshire, New Jersey, New Mexico, Ohio, Oklahoma, Oregon, Pennsylvania, Tennessee, Texas, Vermont, Washington, and Wisconsin for making statewide proclamations declaring March 2022 SUDC Awareness Month.

These are the first U.S. states to join a nationwide effort led by the SUDC Foundation to raise awareness of one of the most under-recognized medical tragedies of our time, marking the beginning of a month-long worldwide campaign.

Sudden Unexplained Death in Childhood (SUDC) is a category of death in children over the age of 1 year which remains unexplained after a thorough investigation, including an autopsy. Most often, a seemingly healthy child goes to sleep and never wakes up.

"Even though SUDC affects approximately 400 children in the United States annually, many physicians and medical professionals are unaware of it," says Dr. Erin Bowen, Vice President of the SUDC Foundation and pediatrician, "Increased awareness can lead to further research initiatives to help uncover causes and risk factors for these deaths, with the ultimate goal of preventing them, leading to a future free of SUDC."

Recent research at NYU Langone health discovered the first genetic underpinnings of SUDC.

Awareness is key to identifying cases of SUDC for research. Recent research funded by the SUDC Foundation and published in the "Proceedings of the National Academy of Sciences" analyzed the DNA codes of 124 children who were lost to SUDC as well as their biological parents. The researchers at NYU Grossman School of Medicine found that nearly 9 percent-or 11 of the 124 children-had DNA code changes in genes that regulate calcium function and attributed these changes to contributing to their deaths. Additional research by the group, also funded by the SUDC Foundation, found disagreements in 40% of cause of death opinions among 100 cases sudden unexpected pediatric deaths reviewed suggesting the SUDC rate by the U.S. Centers for Death Control and Prevention (CDC) may be an underestimation.

"Each March, we try to make incredible strides to raise awareness throughout SUDC Awareness month," said Laura Gould, President and Co-founder of the SUDC Foundation. "We see every day how critical awareness is to identify families affected as well as advocating for crucial research."

The SUDC Foundation is advocating for SUDC Awareness Month proclamations in all 50 U.S. states this March. In 2021, 43 U.S. states participated. This nationwide effort began in 2016, inspired by Drew Joseph Boswell and the Boswell family. The Boswell family successfully advocated for the first statewide proclamation declaring March 2015 as SUDC Awareness Month in the State of Louisiana.

To see a full list of previous efforts as well as additional states who have joined, please visit: https://sudc.org/legislation-and-policy/sudc-awareness-proclamations/

The SUDC Foundation will once again mark SUDC Awareness Month by hosting weekly activities to raise awareness of SUDC and remember the children gone far too soon. To learn more, please visit: https://sudc.org/sudc-awareness-month/

RELATED LINKS
https://www.pnas.org/doi/full/10.1073/pnas.2115140118

The Sudden Unexplained Death in Childhood (SUDC) Foundation thanks Arkansas, Alabama, Arizona, Connecticut, Georgia, Hawaii, Illinois, Indiana, Maine, Massachusetts, Mississippi, Missouri, Montana, Nevada, New Hampshire, New Jersey, New Mexico, Ohio, Oklahoma, Oregon, Pennsylvania, Tennessee, Texas, Vermont, Washington, and Wisconsin for making statewide proclamations declaring March 2022 SUDC Awareness Month.

Related link: https://sudc.org/

Twenty-Nine States Proclaim March SUDC Awareness Month for Unexplained Childhood Deaths

ROSELAND, N.J. /ScoopCloud/ -- The Sudden Unexplained Death in Childhood (SUDC) Foundation thanks Alabama, Arizona, Arkansas, Florida, Georgia, Hawaii, Idaho, Indiana, Kansas, Louisiana, Massachusetts, Mississippi, Missouri, Montana, Nebraska, Nevada, New Hampshire, New Mexico, North Dakota, Oklahoma, Oregon, Pennsylvania, South Carolina, Tennessee, Vermont, Washington, West Virginia, Wisconsin and Wyoming for making statewide proclamations declaring March 2021 as SUDC Awareness Month. The SUDC Foundation also applauds the California State Legislature for recognizing SUDC Awareness Month in House Resolution 24.

These are the first states to join a nationwide effort led by the SUDC Foundation to raise awareness of one of the most under-recognized medical tragedies of our time, marking the beginning of a month-long campaign all over the world.

Sudden Unexplained Death in Childhood (SUDC) is a category of death in children over the age of 1 year which remains unexplained after a thorough investigation, including an autopsy. Most often, a seemingly healthy child goes to sleep and never wakes up. Approximately 400 children are lost to SUDC in the United States every year.

"As we enter another March, we are energized to have another successful month of raising SUDC awareness," said Laura Gould Crandall, President and Co-founder of the SUDC Foundation. "Awareness is crucial for funding critical research and supporting those affected by sudden unexpected or unexplained death in childhood. SUDC is the fifth leading category of death in children ages 1 to 4, yet SUDC receives no targeted public funding. The SUDC Foundation provides all services at no cost to bereaved families. Awareness helps families find us when they need us most and awareness launches us toward a world free of SUDC."

"Throughout March, we will continue to focus efforts around increasing awareness within the medical community as well," added Dr. Erin Bowen, SUDC Foundation Vice President and pediatrician. "Despite the fact that SUDC affects approximately 400 children annually, many physicians and medical professionals are unaware of it. Currently the understanding of SUDC eludes the medical community. Increased awareness can lead to further research initiatives to help uncover causes and risk factors for these deaths, with the ultimate goal of preventing them, leading to a future free of SUDC. As we work toward a deeper understanding of SUDC, we can ensure that families are adequately supported when these tragedies occur.

"If even one new family is connected to the SUDC Foundation as a result of our community's awareness efforts, then we can consider this month a success. Many bereaved parents will tell you their biggest fear is their child will be forgotten. SUDC Awareness Month gives us an opportunity to share the stories of these families, to honor the children affected and to say their names. SUDC awareness gives families a voice."

The SUDC Foundation will once again mark SUDC Awareness Month by hosting weekly awareness activities for all supporters to participate. To learn more, please visit: https://sudc.org/get-involved/sudc-awareness-month.

The SUDC Foundation is advocating for SUDC Awareness Month proclamations in all 50 U.S. states this March. In 2020, 41 participated. This nationwide effort began in 2016, inspired by Drew Joseph Boswell and the Boswell family. The Boswell family successfully advocated for the first statewide proclamation declaring March 2015 as SUDC Awareness Month in the State of Louisiana.

To see a list of previous efforts as well as additional states who have joined, please visit: https://sudc.org/get-involved/legislative-advocacy/sudc-awareness-proclamations.

About the SUDC Foundation:

The SUDC Foundation's mission is to promote awareness, advocate for research and support those affected by SUDC. The SUDC Foundation provides all services at no cost to families.

The Sudden Unexplained Death in Childhood (SUDC) Foundation thanks Alabama, Arizona, Arkansas, Florida, Georgia, Hawaii, Idaho, Indiana, Kansas, Louisiana, Massachusetts, Mississippi, Missouri, Montana, Nebraska, Nevada, New Hampshire, New Mexico, North Dakota, Oklahoma, Oregon, Pennsylvania, South Carolina, Tennessee, Vermont, Washington, West Virginia, Wisconsin and Wyoming for making statewide proclamations declaring March 2021 as SUDC Awareness Month.

Related link: https://sudc.org/

Federal Bill to Address Unexpected Child, Infant Deaths is Now Law

ROSELAND, N.J. /ScoopCloud/ -- The SUDC Foundation applauds final passage of Scarlett's Sunshine on Sudden Unexpected Death Act. This legislation was introduced by U.S. Senators Bob Casey (D-PA), Johnny Isakson (R-GA), Sherrod Brown (D-OH), Doug Jones (D-AL) and Dan Sullivan (R-AK) and U.S. Representatives Gwen Moore (WI-04), Tom Cole (OK-04) and Jaime Herrera Beutler (WA-03) to combat sudden, unexpected infant and child deaths. The legislation was introduced in honor of Scarlett Pauley, who was lost to SUDC in January 2017 when she was just 16 months old.

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. Approximately 400 children are lost to SUDC in the United States every year.

"Scarlett's Sunshine is named after a little girl who was lost to Sudden Unexplained Death in Childhood," said Senator Casey. "We must do more to understand why certain infants and young children have died unexpectedly, and to learn what is causing these deaths. I introduced the Scarlett's Sunshine on Sudden Unexpected Death Act to help increase our understanding of the causes of unexplained infant and child deaths and to help us develop new tools to prevent and reduce such deaths in the future. I am pleased that Congress has passed the Scarlett's Sunshine on Sudden Unexpected Death Act and it is now law."

"It's wonderful news that the Scarlett Sunshine Act is now law. I thank the incredible advocates and other lawmakers who made this all possible. I send my love to every family who had to experience this heartache and painful losses. This bill was written for Scarlett Lillian Pauley and other children who were lost to SUID/SUDC and works to prevent these tragedies. I am ready to continue building upon this legislation to save lives," Congresswoman Moore said.

"Scarlett's Sunshine Act will finally provide the support our country needs to ensure that infant and child deaths are comprehensively investigated, and that data is not only analyzed to help the individual family with the most accurate diagnosis but also help future research efforts," said Laura Gould Crandall, President and Co-Founder of the SUDC Foundation. "When your child dies, you are thrown into a public investigation system and you have no control over the tests being done on your child or the tests that are not being pursued. You often find out later, when it is too late. I am relieved to know that this new law will better support our country's response to these tragedies for the families directly affected, and to support the better health of all children."

"On January 8th, 2017, our lives were shattered when our beautiful, healthy, thriving daughter, Scarlett Lillian Pauley, went to sleep and never woke up. And we do not know why," said Stephanie Zarecky and Ryan Pauley. "Losing a child is the single greatest pain we could ever imagine and living without answers magnifies the tragedy exponentially. We try every day to spread Scarlett's Sunshine, allowing her memory to shine on and bring light to SUDC, the medical mystery that took her from us.

"We are so thankful her name will be able to live on in law and hope that one day no more families know the tragedy we have suffered. We are also so grateful to Senator Casey and Congresswoman Moore for their leadership on Scarlett's Sunshine on Sudden Unexpected Death Act in honor of Scarlett and all of the children who are dearly loved and deeply missed."

Scarlett's Sunshine on Sudden Unexpected Death Act strengthens existing efforts to understand SUID and SUDC better, facilitate data collection and analysis, improve preventative efforts, and support children and families.

The SUDC Foundation is proud to have advocated for this legislation. In November of 2019, SUDC Foundation board members and Ambassadors headed to Washington D.C. to educate their congressional representatives on SUDC and the importance of the legislation. Scarlett's mother, Stephanie, testified in front of Congress last year on the third anniversary of Scarlett's death.

To learn more and support Scarlett's Sunshine on Sudden Unexpected Death Act, please visit: https://sudc.org/advocacy/scarletts-sunshine-act

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. Learn more: https://sudc.org.

*LOGO Link for media: https://www.Send2Press.com/300dpi/21-0105s2p-scarlett-sunshine-300dpi.jpg

The SUDC Foundation applauds final passage of Scarlett's Sunshine on Sudden Unexpected Death Act. This legislation was introduced by U.S. Senators Bob Casey (D-PA), Johnny Isakson (R-GA), Sherrod Brown (D-OH), Doug Jones (D-AL) and Dan Sullivan (R-AK) and U.S. Representatives Gwen Moore (WI-04), Tom Cole (OK-04) and Jaime Herrera Beutler (WA-03).

Related link: https://sudc.org/

Twenty-Two States Proclaim March 2020 SUDC Awareness Month for Unexplained Childhood Deaths

ROSELAND, N.J. /ScoopCloud/ -- The Sudden Unexplained Death in Childhood (SUDC) Foundation thanks Alabama, Arkansas, Florida, Georgia, Hawaii, Illinois, Iowa, Louisiana, Massachusetts, Mississippi, New Hampshire, New York, North Carolina, North Dakota, Oklahoma, Pennsylvania, Rhode Island, South Carolina, Tennessee, Texas, Virginia, West Virginia for making statewide proclamations declaring March 2020 SUDC Awareness Month.

These are the first states to join a nationwide effort led by the SUDC Foundation to raise awareness of one of the most under-recognized medical tragedies of our time, marking the beginning of a month-long campaign all over the world.

Sudden Unexplained Death in Childhood (SUDC) is a category of death in children over the age of 1 year which remains unexplained after a thorough investigation, including an autopsy. Most often, a seemingly healthy child goes to sleep and never wakes up. Approximately 400 children are lost to SUDC in the United States every year.

"We have made incredible strides as we honor SUDC Awareness Month each March," said Laura Gould Crandall, President and Co-founder of the SUDC Foundation. "Last year, we surpassed serving our 1,000th family since the inception of the SUDC Foundation. While we are sorry for the reason, we are thankful these families were able to connect with our worldwide community and unique range of services. This is a true testament to the SUDC Foundation's tireless outreach and awareness efforts. But we must keep striving to ensure every family who needs us is able to find us and to advocate for research that will help us create a world without SUDC."

The SUDC Foundation will once again mark SUDC Awareness Month by hosting weekly activities for every SUDC supporter to raise awareness of SUDC and remember the children gone far too soon.

To learn more, please visit: https://sudc.org/get-involved/sudc-awareness-month

The SUDC Foundation is advocating for SUDC Awareness Month proclamations in all 50 U.S. states this March. In 2019, 43 U.S. states participated. This nationwide effort began in 2016, inspired by Drew Joseph Boswell and the Boswell family. The Boswell family successfully advocated for the first statewide proclamation declaring March 2015 as SUDC Awareness Month in the State of Louisiana.

To see a full list of previous efforts as well as additional states who have joined, please visit: https://sudc.org/get-involved/legislative-advocacy/sudc-awareness-proclamations

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. Learn more: https://sudc.org/

Media Contact:
Stephanie Zarecky
The SUDC Foundation
Tel 973.795.1257
stephanie@sudc.org

*LOGO links for media:
[1] SUDC Logo: https://www.Send2Press.com/300dpi/18-0228s2p-sudc-fdn-300dpi.jpg

[2] Awareness Logo: https://www.Send2Press.com/300dpi/19-0301s2p-SUDC-AwarenessMonth-300dpi.jpg

The Sudden Unexplained Death in Childhood (SUDC) Foundation thanks Alabama, Arkansas, Florida, Georgia, Hawaii, Illinois, Iowa, Louisiana, Massachusetts, Mississippi, New Hampshire, New York, North Carolina, North Dakota, Oklahoma, Pennsylvania, Rhode Island, South Carolina, Tennessee, Texas, Virginia, West Virginia for making statewide proclamations declaring March 2020 SUDC Awareness Month.

Related link: https://sudc.org/

Groundbreaking New Book Fills Dire Needs in Unexplained Pediatric Deaths

ROSELAND, N.J. /ScoopCloud/ -- The SUDC Foundation recently published a first-of-its kind book, "Unexplained Pediatric Deaths: Investigation, Certification and Family Needs" (ISBN: 978-0998904320) a collaboration between the National Association of Medical Examiners (NAME) and the American Academy of Pediatrics (AAP), which establishes the first ever national consensus guidelines in the U.S. to fill crucial needs to determine why unexplained pediatric deaths happen and how to support families after these tragedies.

Each year in the U.S., over 3,000 infants and children who are otherwise apparently healthy, die suddenly and without explanation. These deaths not only have profound effects on families, but also serious implications for our public health system. Currently, no national standards for investigating these deaths exist, severely handicapping our ability to understand and prevent them in the future.

"The devastating loss of a child is compounded when we cannot explain how that precious life ended," said Elizabeth Bundock, M.D., Ph.D., Deputy Chief Medical Examiner for the Office of the Chief Medical Examiner in Burlington, Vermont and one of the editors of the book. "While many of these unexplained deaths expose the limits of our collective medical knowledge, ideally, none should expose shortcomings in our effort to identify the cause of death."

Bundock adds, "The medicolegal investigation of a child death is complex, requiring the meticulous attention of multiple professionals who bring to bear special techniques and resources. Variability in the medicolegal response is inevitable and flexibility is essential. However, the guidance provided in Unexplained Pediatric Deaths can move the U.S. closer to a consistently comprehensive approach."

"Over the last two decades, I have spoken to over 1,000 families who lost seemingly healthy, thriving children suddenly, unexpectedly and most often without answers as to why," said Laura Gould Crandall, Co-founder and President of the Sudden Unexplained Death in Childhood Foundation and one of the authors of the book. "These families deserve better than our current system provides. Without the improvements included in this book, we cannot truly know how many children are dying, we cannot perform the ideal research to understand and prevent them, and we cannot fully support families through their grief. We are so thankful to the authors of this book, especially the lead editors Dr. Elizabeth Bundock and Dr. Tracey Corey, for dedicating their expertise and diligently guiding our collective group of multidisciplinary collaborators to fix a broken system for the betterment of all children."

"This book draws on the experience and insight of dozens of experts from around the country," said Tracey Corey, M.D., Associate Medical Examiner for Florida Districts 5 & 24 and one of the editors of the book. "Each guideline was developed based on extensive research, historical context and sound rationale. Implementing them will advance the way we investigate these deaths, arming us with a system that will help us better determine why these deaths happen and support those we serve."

"This book represents the state-of-the art on our knowledge and assessment of sudden pediatric deaths, representing the cumulative wisdom of leading experts across diverse medical and scientific disciplines," said Orrin Devinsky, M.D., of New York University Langone Health and one of the authors of the book. "The experience of affected parents has greatly strengthened the value and sensitivity of this extraordinary effort."

"Unexplained Pediatric Deaths: Investigation, Certification and Family Needs" establishes the first national consensus guidelines to address the shortfalls in our current death investigation system. It outlines procedural guidance for a comprehensive investigation and autopsy and provides guidance to promote consistent classification of unexplained pediatric deaths, which greatly impacts our ability to understand how often they occur. It also offers recommendations for the care of families after such tragedies. Adoption of these guidelines is critical to achieve a better understanding of these deaths, successful public health prevention strategies and appropriate care of the bereaved.

"Unexplained Pediatric Deaths" began when the SUDC Foundation awarded a grant to NAME to work in collaboration with the AAP to convene an expert panel to identify and discuss these critical issues. The publication is a combined effort of a panel of medical examiners, pediatricians and federal agency representatives who represent the diverse interests of epidemiology, death investigation, autopsy performance, death certification, clinical subspecialties (neurology, cardiology, child abuse, injury prevention, infectious diseases, genetics and metabolic diseases), family needs, prevention and research.

To read a more detailed summary, please visit: https://sudc.org/education-resources/media-resources.

To learn more about the book and view a full list of authors available for interviews throughout the U.S., please visit https://sudpeds.com/.

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. SUDC is a category of death in children over the age of 1 year which remains unexplained after a thorough investigation and autopsy.

To learn more about SUDC and the SUDC Foundation, please visit https://sudc.org/.

Media Contact:
Stephanie Zarecky
The SUDC Foundation
stephanie@sudc.org

*PHOTO link for media: https://www.Send2Press.com/300dpi/20-0212s2p-upd-book-300dpi.jpg
*Photo caption: Book jacket, "Unexplained Pediatric Deaths: Investigation, Certification and Family Needs" (ISBN: 978-0998904320).

The SUDC Foundation recently published a first-of-its kind book, "Unexplained Pediatric Deaths: Investigation, Certification and Family Needs" (ISBN: 978-0998904320) a collaboration between the National Association of Medical Examiners (NAME) and the American Academy of Pediatrics (AAP), which establishes the first ever national consensus guidelines in the U.S. to fill crucial needs to determine why unexplained pediatric deaths happen and how to support families after these tragedies.

Related link: https://sudc.org/

New Research Sheds Light on Potential Role of Febrile Seizures and Other Risk Factors in Sudden Deaths in Children

ROSELAND, N.J. /ScoopCloud/ -- The SUDC Foundation highlights newly-published research from the Journal of American Medical Association (JAMA) that identifies an increased rate of febrile seizures among children who die suddenly, both with and without explanation. The authors of the article report the need for more research to identify febrile seizure patients at higher risk, as well as other potential risk factors of sudden death in children.

The published research, entitled "Sudden Deaths in Children: Potential Role of Febrile Seizures and Other Risk Factors," examined 391 cases of both Sudden Unexplained Death in Childhood (SUDC) and sudden, explained deaths in children between the ages of 1 and 6 years from 2001-2017. Among those studied, 28.8 percent of SUDC cases and 22.1 percent of sudden, explained cases also had a reported history of febrile seizures. In comparison, two to five percent of the general population experience febrile seizures. These findings mark the first time a significant increase in febrile seizures was found among sudden, explained child deaths.

"Sudden Unexplained Death in Childhood remains a tragic disorder that claims far too many lives and has been the subject of far too little research and public awareness," said Orrin Devinsky, M.D., of New York University Langone Health.

"This study has brought us closer to understanding the causes of some SUDC cases," said Daniel Friedman, M.D., of New York University Langone Health. "In the past decade, there have significant advances in understanding the mechanisms of seizure-related sudden death in people with epilepsy through animal models. This study provides the rational for extending these models to help identify risk biomarkers and preventative strategies for SUDC as well."

"I hope our analysis provides some reassurance to families who lost children to SUDC in that we did not identify a single case of unexplained sibling death," said Laura Gould Crandall, lead author and Executive Director and Co-founder of the SUDC Foundation. "To improve our understanding of SUDC, we need population-based studies where we examine cases that better reflect the general population and are informed by standardized investigations with additional testing, including genetic testing."

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.

The research also indicated the children in the study were over four times more likely to die during sleep in the SUDC cases as opposed to the sudden, explained cases. And none of the children studied had a sibling who also died prematurely from SUDC.

The full article will be available at 11 a.m. EDT on Friday, April 26, 2019.

To learn more about SUDC and the SUDC Foundation, please visit https://sudc.org/.

Additional information on "Sudden Deaths in Children: Potential Role of Febrile Seizures and Other Risk Factors": Data for this study was collected from 622 family members of children who died suddenly and unexpectedly and voluntarily registered with the SUDC Foundation. The family members provided the data evaluated through a comprehensive interview on medical and social histories and circumstances of death and forensic evaluations revealed an explained or unexplained cause of death (SUDC). Over 59 percent were male and the average age at death was 24.9 months.

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.

The SUDC Foundation highlights newly-published research from the Journal of American Medical Association (JAMA) that identifies an increased rate of febrile seizures among children who die suddenly, both with and without explanation. The authors of the article report the need for more research.

Related link: https://sudc.org/

SUDC Foundation Applauds Reintroduction of Federal Bill to Address Unexpected Child, Infant Deaths

ROSELAND, N.J. /ScoopCloud/ -- The SUDC Foundation is pleased to support Scarlett's Sunshine on Sudden Unexpected Death Act, legislation reintroduced by U.S. Senators Bob Casey (D-PA), Johnny Isakson (R-GA), Sherrod Brown (D-OH), Doug Jones (D-AL) and U.S. Representatives Gwen Moore (WI-04), Tom Cole (OK-04) and Jaime Herrera Beutler (WA-03) to combat sudden, unexpected infant and child deaths. The legislation was introduced in honor of Scarlett Pauley, who was lost to SUDC in January 2017 when she was just 16 months old.

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. Approximately 400 children are lost to SUDC in the United States every year.

"This legislation is named 'Scarlett's Sunshine' after a little girl who was lost to Sudden Unexplained Death in Childhood," said Senator Casey. "I wanted to honor Scarlett's memory and make sure that the federal government is taking all possible steps to ensure that no family will have to suffer the death of a child, without knowing why. It's appalling that approximately 400 children ages 1-18 and over 3,600 infants each year are dying from these unexplained causes. I urge my colleagues to join us in this bipartisan, bicameral effort."

"I'm honored to join my colleagues in reintroducing this important bill in memory of Scarlett Lillian Pauley and to help prevent the unexpected deaths of any more beautiful children in our community. No one deserves the heartache of losing a child. Not knowing the cause only compounds this awful pain. This issue hits close to home for me as my own state, Wisconsin, struggles with high infant mortality rates among African Americans. And to be clear, SUID/SIDS/SUDC is not a parenting issue. Parents, regardless of background or economic status should not have to live with this uncertainly and fear of losing their precious children and babies, and we're teaming up to do something about it," Congresswoman Moore said.

"While it is the fifth leading category of death among children ages 1 to 4, SUDC has not been directly addressed in our federal policy in regard to surveillance, research or prevention strategies," said Laura Gould Crandall, Executive Director and Co-Founder of the SUDC Foundation. "We can and we must do better. We applaud Senator Casey's and Congresswoman Moore's leadership on behalf of SUDC families worldwide and look forward to working with them to achieve our mission of a future free of SUDC."

"On January 8th, 2017, our lives were shattered when our beautiful, healthy, thriving daughter, Scarlett Lillian Pauley, went to sleep and never woke up. And we do not know why," said Stephanie Zarecky and Ryan Pauley. "Losing a child is the single greatest pain we could ever imagine and living without answers magnifies the tragedy exponentially. We try every day to spread Scarlett's Sunshine, allowing her memory to shine on and bring light to SUDC, the medical mystery that took her from us. We thank Senator Casey and Congresswoman Moore for their leadership on Scarlett's Sunshine on Sudden Unexpected Death Act in honor of Scarlett and all of the other children who are deeply loved and missed."

If passed into law, Scarlett's Sunshine on Sudden Unexpected Death Act would supply grants to help states, municipalities and nonprofits improve data collection and death scene investigations related to unexpected infant and child deaths, promote safe sleep practices and ensure death reviews are completed for 100 percent of infant and child fatalities. Currently, there are no nationwide standards for investigating and collecting data following an infant or child death. This makes it often impossible to determine the causes of these deaths, and what strategies our country can implement to prevent these tragedies.

This bill has been cosponsored by Josh Gottheimer (D-NJ), Yvette D. Clarke (D-NY), Cathy McMorris Rodgers (R-WA), Susan K. DelBene (D-WA), Debbie Wasserman Schultz (D-FL), Peter King (R-NY), Betty McCollum (D-MN), Raúl M. Grijalva (D-AZ), Eleanor Holmes Norton (D-D.C.), Ro Khanna (D-CA), and Matt Cartwright (D-PA) in the House of Representatives. It has also been endorsed by the American Academy of Pediatrics, March of Dimes, Children's Hospital Association, Cribs for Kids, First Candle, KID: Fighting for Product Safety and the Aaron Matthew SIDS Research Guild of Seattle Children's Hospital.

To learn more and support Scarlett's Sunshine on Sudden Unexpected Death Act, please visit: https://sudc.org/advocacy/scarletts-sunshine-act

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. Learn more: https://sudc.org.

The SUDC Foundation is pleased to support Scarlett's Sunshine on Sudden Unexpected Death Act, legislation reintroduced by U.S. Senators Bob Casey (D-PA), Johnny Isakson (R-GA), Sherrod Brown (D-OH), Doug Jones (D-AL) and U.S. Representatives Gwen Moore (WI-04), Tom Cole (OK-04) and Jaime Herrera Beutler (WA-03) to combat sudden, unexpected infant and child deaths.

Related link: https://sudc.org/

Twenty States Proclaim March SUDC Awareness Month for Unexplained Childhood Deaths

ROSELAND, N.J. /ScoopCloud/ -- The Sudden Unexplained Death in Childhood (SUDC) Foundation is pleased to announce 20 states, Arizona, Arkansas, Florida, Hawaii, Indiana, Louisiana, Mississippi, Missouri, Montana, Nevada, New Hampshire, Ohio, Pennsylvania, Rhode Island, South Carolina, Tennessee, Texas, Utah, Washington and West Virginia have made statewide proclamations declaring March 2019 SUDC Awareness Month.

These are the first states to join a nationwide effort led by the SUDC Foundation to raise awareness of one of the most under-recognized medical tragedies of our time, marking the beginning of a month-long campaign all over the world.

Sudden Unexplained Death in Childhood (SUDC) is a category of death in children over the age of 1 year which remains unexplained after a thorough investigation and autopsy. Most often, SUDC occurs in otherwise healthy children during sleep. Approximately 400 children are lost to SUDC in the United States every year.

"We want every family who loses a child to SUDC to be able to find the SUDC Foundation to get support as soon they need us," said Laura Gould Crandall, Executive Director and Co-Founder of the SUDC Foundation. "These families too often feel lost and alone in their grief, without information, resources or knowledge that other families exist with a similar loss. Raising awareness of SUDC is essential to our work to support those affected by SUDC and advocate for research that will help us create a world without SUDC."

The SUDC Foundation will once again honor SUDC Awareness Month by hosting weekly activities for every SUDC supporter to raise awareness of SUDC and remember the children gone far too soon.

To learn more, please visit: https://sudc.org/advocacy/sudc-awareness-month.

The SUDC Foundation is advocating for SUDC Awareness Month proclamations in all 50 U.S. states this March. In 2018, 43 U.S. states participated. This nationwide effort began in 2016, inspired by Drew Joseph Boswell and the Boswell family. The Boswell family successfully advocated for the first statewide proclamation declaring March 2015 as SUDC Awareness Month in the State of Louisiana.

To see a full list of previous efforts as well as additional states who have joined, please visit: https://sudc.org/advocacy/legislative-policy-and-advocacy/us-state-proclamations

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. Learn more: https://sudc.org/.

The Sudden Unexplained Death in Childhood (SUDC) Foundation is pleased to announce 20 states, Arizona, Arkansas, Florida, Hawaii, Indiana, Louisiana, Mississippi, Missouri, Montana, Nevada, New Hampshire, Ohio, Pennsylvania, Rhode Island, South Carolina, Tennessee, Texas, Utah, Washington and West Virginia have made statewide proclamations declaring March 2019 SUDC Awareness Month.

Related link: https://sudc.org/

SUDC Foundation Applauds Introduction of Federal Bill to Address Unexpected Child, Infant Deaths

CEDAR GROVE, N.J. /ScoopCloud/ -- The SUDC Foundation is pleased to support Scarlett's Sunshine on Sudden Unexpected Death Act, legislation introduced by U.S. Senators Bob Casey (D-PA), Johnny Isakson (R-GA), Sherrod Brown (D-OH), and U.S. Representatives Gwen Moore (WI-04), Tom Cole (OK-04) and Jaime Herrera Beutler (WA-03) to combat Sudden Unexplained Death in Childhood (SUDC) and Sudden Unexpected Infant Death (SUID). The legislation was introduced in honor of Scarlett Pauley, who was lost to SUDC in January 2017 when she was just 16 months old.

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.

"This legislation is named 'Scarlett's Sunshine' after a little girl who was lost to Sudden Unexplained Death in Childhood," said Senator Casey. "I wanted to honor Scarlett's memory and make sure that the federal government is taking all possible steps to ensure that no family will have to suffer the death of a child, without knowing why. It's appalling that over 400 children ages 1-4 and over 3,600 infants each year are dying from these unexplained causes. I urge my colleagues to join us in this bipartisan, bicameral effort."

"Wisconsin has the highest rate of Black infant mortality in the nation. Our babies die at rates comparable to war-torn countries like Syria," said Representative Moore. "This doesn't have anything to do with good or bad parenting. But because there are no nationwide standards for investigations and data collection, parents are often left wondering what went wrong and what they could have done to prevent their baby from dying. No mother, no matter her background, should have to with live with this uncertainty, thinking it was their fault. That's why this bipartisan and bicameral bill to fund critical data collection is a game changer. We need to know the root of the problem to solve it."

"While it is the fifth leading category of death among children ages 1 to 4, SUDC has not been directly addressed in our federal policy in regards to surveillance, research or prevention strategies," said Laura Gould Crandall, Executive Director and Co-Founder of the SUDC Foundation. "We can and we must do better. We applaud Senator Casey's and Congresswoman Moore's leadership on behalf of SUDC families worldwide and look forward to working with them to achieve our mission of a future free of SUDC."

"On January 8th, 2017, our lives were shattered when our beautiful, healthy, thriving daughter, Scarlett Lillian Pauley, went to sleep and never woke up. And we do not know why," said Stephanie Zarecky and Ryan Pauley. "Losing a child is the single greatest pain we could ever imagine and living without answers magnifies the tragedy exponentially. We try every day to spread Scarlett's Sunshine, allowing her memory to shine on and bring light to SUDC, the medical mystery that took her from us. We thank Senator Casey and Congresswoman Moore for their leadership on Scarlett's Sunshine on Sudden Unexpected Death Act in honor of Scarlett and all of the other children who are deeply loved and missed."

If passed into law, Scarlett's Sunshine Act it will authorize over $49 million in new federal funding to strengthen efforts to better track, understand and prevent SUDC and SUID. Specifically, it would supply grants to help states and municipalities to improve data collection and death scene investigations related to unexpected infant and child deaths and ensure death reviews are completed for 100 percent of infant and child fatalities. Currently, there are no nationwide standards for investigating and collecting data following an infant or child death. This makes it nearly impossible to determine the causes of these deaths and what strategies our country can implement to prevent these tragedies.

This bill has also been endorsed by the American Academy of Pediatrics, Children's Hospital Association, Cribs for Kids, First Candle, March of Dimes, Kids in Danger, Within Our Reach and the Aaron Matthew SIDS Guild of Seattle Children's Hospital.

To learn more and support Scarlett's Sunshine on Sudden Unexpected Death Act, please visit: https://sudc.org/advocacy/scarletts-sunshine-act

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. Learn more: https://sudc.org.

The SUDC Foundation is pleased to support Scarlett's Sunshine on Sudden Unexpected Death Act, legislation introduced by U.S. Senators Bob Casey (D-PA), Johnny Isakson (R-GA), Sherrod Brown (D-OH), and U.S. Representatives Gwen Moore (WI-04), Tom Cole (OK-04) and Jaime Herrera Beutler (WA-03) to combat Sudden Unexplained Death in Childhood (SUDC) and Sudden Unexpected Infant Death (SUID).

Related link: https://sudc.org/

SUDC Foundation Celebrates Launch of UK Affiliate, SUDC UK

CEDAR GROVE, N.J. /ScoopCloud/ -- The Sudden Unexplained Death in Childhood (SUDC) Foundation is pleased to announce the launch of its affiliate in the United Kingdom, SUDC UK. The SUDC Foundation, which is based in the United States, serves over 800 families in 18 countries who have experienced the unique challenges and unanswered questions that follow a sudden, unexpected and unexplained loss of a child.

SUDC UK will build upon the SUDC Foundation's efforts in the U.K. to increase awareness of SUDC and raise funds for expanded research initiatives on one of the most under-recognized medical tragedies of our time.

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. According to the U.S. Centers for Disease Control and Prevention, at least 400 children in the United States are lost annually to SUDC. It is most common in young children and is the fifth leading category of death among children ages of 1 to 4 years. Comparably, the Office of National Statistics for England and Wales states 42 children were lost to SUDC in 2016, of which 25 were aged 1-4 years.

"We are so excited to announce the launch of SUDC UK," said Laura Gould Crandall, Executive Director and Co-Founder of the SUDC Foundation. "The SUDC Foundation is proud of its history of being the only worldwide organization devoted to supporting those who have been devastated by SUDC. SUDC UK will help us expand our outreach efforts to support more U.K. families and advocate for research that will further our understanding of SUDC and ways to prevent it."

"Nikki, Helen and I are proud to announce the birth of SUDC UK, an affiliate to the SUDC Foundation and a U.K. charity whose sole purpose is to promote awareness, advocate for more research and build a connected and compassionate SUDC community," said Camilla Gooden Co-Founder of SUDC UK. "SUDC UK is launched in memory of all our children and we hope we can make a difference by shining their light on SUDC. We are eternally thankful to the SUDC Foundation for supporting us on our journey to make this happen. We very much hope to see as many U.K. families as possible at our launch on 21st April."

SUDC UK will enhance the SUDC Foundation's efforts to support the needs of the SUDC community in the United Kingdom. While the SUDC Foundation will continue to provide bereavement support to SUDC families in the U.K., SUDC UK will spearhead a national public awareness campaign to raise awareness of SUDC in the U.K. as well as raise funds for expanded SUDC research initiatives. Through prior efforts, leadership of SUDC UK have raised over $228,000 (£184,500) in funding to support SUDC and bereaved families.

SUDC UK will celebrate its launch at an event on Saturday, April 21st at Chessington World of Adventures Resort supported by The Lullaby Trust. The event will honor families whose toddler or child died suddenly and unexpectedly as well as feature a presentation on the work of SUDC UK.

To learn more about SUDC and the SUDC Foundation, please visit https://sudc.org/.

To learn more about the SUDC UK, please visit: https://www.sudc.org/uk.

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 SUDC UK:

SUDC UK is dedicated to increasing awareness of sudden unexpected deaths in childhood and funding crucial research to better understand and prevent these tragedies. Co-founded by three SUDC bereaved mothers in memory of all SUDC children, they hope to make a difference by shining a light on SUDC.

The Sudden Unexplained Death in Childhood (SUDC) Foundation is pleased to announce the launch of its affiliate in the United Kingdom, SUDC UK. The SUDC Foundation, which is based in the United States, serves over 800 families in 18 countries who have experienced the unique challenges and unanswered questions that follow a sudden, unexpected and unexplained loss of a child.

Related link: https://sudc.org/

Ten States Proclaim March 2018 Awareness Month for Unexplained Childhood Deaths to Kick Off Month-Long Campaign

CEDAR GROVE, N.J. /ScoopCloud/ -- The Sudden Unexplained Death in Childhood (SUDC) Foundation is pleased to announce nine states, Alabama, Arizona, Iowa, Louisiana, Michigan, Nevada, Oklahoma, South Carolina, Utah & Wisconsin, have made statewide proclamations declaring March 2018 SUDC Awareness Month. These are the first states to join a nationwide effort led by the SUDC Foundation to raise awareness of one of the most under-recognized medical tragedies of our time.

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.

"Far too often, the first time people hear about SUDC is when they, or someone they know, has lost a child to it," said Laura Gould Crandall, Executive Director and Co-Founder of the SUDC Foundation. "SUDC families too often grieve in isolation, without information, resources or knowledge that other families exist with a similar loss. Raising awareness of SUDC is integral to the work of the SUDC Foundation so we can support those affected by SUDC and advocate for research that will further our understanding of the causes and ways to prevent SUDC."

The SUDC Foundation is advocating for SUDC Awareness Month proclamations in all 50 U.S. states this March. In 2017, 36 U.S. states participated. This nationwide effort began in 2016, inspired by Drew Joseph Boswell and the Boswell family. The Boswell family successfully advocated for the first statewide proclamation declaring March 2015 as SUDC Awareness Month in the State of Louisiana.

To see a full list of previous efforts as well as additional states who have joined, please visit: https://sudc.org/advocacy/legislative-policy-and-advocacy/us-state-proclamations

This year, the SUDC Foundation is expanding its awareness month campaign to host weekly activities for every SUDC supporter to raise awareness of SUDC and honor the children gone far too soon. To learn more, please visit: https://sudc.org/advocacy/sudc-awareness-month.

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. To learn more about SUDC and the SUDC Foundation, please visit https://sudc.org/.

The Sudden Unexplained Death in Childhood (SUDC) Foundation is pleased to announce nine states, Alabama, Arizona, Iowa, Louisiana, Michigan, Nevada, Oklahoma, South Carolina, Utah and Wisconsin, have made statewide proclamations declaring March 2018 SUDC Awareness Month. These are the first states to join a nationwide effort led by the SUDC Foundation to raise awareness of one of the most under-recognized medical tragedies of our time.

Related link: https://sudc.org/

New Short Film Sheds Light on Struggles of Families Facing Unexplained Death of a Child

CEDAR GROVE, N.J. /ScoopCloud/ -- 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

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.

Related link: https://sudc.org/

Thirty-Seven U.S. State Proclamations Raise Awareness of Mysterious Childhood Deaths

CEDAR GROVE, N.J. /ScoopCloud/ -- The emotional trauma associated with losing a child is overwhelming. But when that loss is combined with a total lack of explanation, grief can become far more complicated, says the SUDC Foundation. Sudden Unexplained Death in Childhood (SUDC) is the sudden unexplained death of a child over the age of one which remains unexplained after a thorough case investigation is conducted.

It is not a diagnosis but a category of death that eludes our scientific understanding today. In 2015, the U.S. Centers for Disease Control and Prevention reported that 393 children between the ages of 1 and 19 years died without a clear explanation for their death. The majority of SUDC deaths affect children aged 1-4 years.

"It is a frightening statistic, especially since SUDC often occurs in otherwise healthy children during sleep-time," explained Laura Crandall, co-founder and President of the SUDC Foundation, which is dedicated to increasing awareness, funding crucial research and the prevention of SUDC.

The Foundation is the only organization worldwide devoted solely to the needs of families and professionals affected by childhood sudden death.

When Devon and Georgia Boswell lost their precious son Drew on March 12, 2014, at the age of 15 months, they were devastated. "When we lost Drew, we felt all our dreams for the future slip through our fingers. How could our healthy 15 month-old, simply not wake up," a question Georgia Boswell still asks today.

Their friend, Christina Grantham, was also shocked by the inexplicable death of little Drew. She joined forces with the SUDC Foundation to improve the country's awareness of this little known tragedy. In 2016, she spearheaded the first nationwide awareness campaign in the U.S. to proclaim SUDC Awareness month to educate the public and raise funds for crucial research. Twenty-six U.S. states signed on.

"It has been an honor to work with Christina Grantham - a tireless volunteer in the fight to understand and prevent SUDC. Her dedication is not only a reflection of her love for Drew, but also her love for all children," states Lorri Caffrey, Co-founder of the SUDC Foundation.

In 2017, with the coordinated efforts of Christina and bereaved parents across the U.S., the campaign continues to grow. To date, thirty-seven (37) U.S. State Legislatures have issued proclamations that March 2017 is SUDC Awareness Month.

"Awareness is a catalyst that can allow the SUDC Foundation to reach more families and help achieve the end goal of a world without sudden unexplained death in childhood. As Drew's Mother, I could not be prouder that his short life and the passion of Christina Grantham, and so many others, have led to success of SUDC awareness month. This initiative is not just for Drew, it is for all SUDC children. Their legacies continue to bring out the best in people each and every day," says Georgia Boswell.

For more information and to view all of the SUDC US State proclamations visit the SUDC Foundation Website at: https://sudc.org/.

About the SUDC Foundation:

The SUDC Foundation is devoted solely to the needs of professionals and families touched by the unexpected death of a child aged 12 months or older. Since its inception, the non-profit Foundation has funded crucial research, helped hundreds of families in over 16 countries, and led many advocacy efforts, including the successful passage of the Sudden Unexpected Death Data Enhancement and Awareness Act, which was signed into law by President Obama in December 2014. For more information, visit https://sudc.org/ and follow us on Twitter @SUDC.

Video (Vimeo), "Explaining the Unexplained":
https://vimeo.com/196286865

The emotional trauma associated with losing a child is overwhelming. But when that loss is combined with a total lack of explanation, grief can become far more complicated, says the SUDC Foundation. Sudden Unexplained Death in Childhood (SUDC) is the sudden unexplained death of a child over the age of one which remains unexplained after a thorough case investigation is conducted.

SUDC Foundation Awards Grant to AAP and NAME to Establish National Guidelines for the Investigation of Sudden Deaths of Children

CEDAR GROVE, N.J. /ScoopCloud/ -- The SUDC Foundation, the only organization worldwide dedicated to sudden unexplained death in childhood (SUDC), has awarded nearly $100,000 to the National Association of Medical Examiners (NAME) to work collaboratively with the American Academy of Pediatrics (AAP) to investigate and establish national practice guidelines surrounding the investigations of sudden unexpected deaths in infants and young children, to determine research needs and the sensitive care of families affected.

The death of a child has profound effects on families and serious implications for our public health system particularly when the death is sudden and unexpected in an apparently healthy infant or child. While causes of these pediatric deaths are numerous and span natural disease, accidents and deaths due to abuse, many are not fully explained despite current efforts.

"No formal standards exist today that delineate the roles of those tasked with the death investigation of a child who dies suddenly, unexpectedly, and without an obvious cause," said Brian Peterson, MD, President of NAME. "We aim to change this by introducing evidence-based protocols that create uniformity and consistency in investigative procedures nationwide."

For the "Sudden Death in Pediatrics: Consensus for Investigation, Certification, Research Direction and Family Needs" project, NAME and AAP will work together to address these issues, leveraging their respective resources, expertise, and reputations. NAME and the AAP are also working collaboratively to revise the AAP policy statement, "Distinguishing Sudden Infant Death Syndrome."

"Although this task has been attempted by smaller groups in the past with limited success, we are confident that our strategic collaboration is set up for success because it is based on each organization's strong commitment to carry out a common mission," said Dr. Peterson of NAME.

"The death of an infant or child is devastating to all those involved. The SUDC Foundation is proud to support this amazing project that will help us better understand these tragedies, improve our surveillance of them, lead to prevention strategies and best support those most personally affected," said Laura Crandall, MA, President and Executive Director of the SUDC Foundation."
"As pediatricians who are dedicated to caring for children and preventing illness and injury, the death of any child is heartbreaking," said Vincent Palusci, MD, FAAP, member of the Executive Committee of the AAP Section on Child Abuse and Neglect. "Many pediatricians participate in community activities such as child death review to help understand the causes of sudden, unexpected deaths, and to identify ways to prevent them. The AAP is proud to be working with NAME to address these important issues and prevent further deaths."
The Sudden Death in Pediatrics project will commence this month to create an expert panel review of sudden and unexpected deaths in pre-pubescent children. This panel, identified by NAME and AAP, will be composed of professionals from various disciplines and settings representing the interests of death investigation, autopsy performance, certifications, genetic/metabolic testing, legal issues, and family needs. All panel members will be active in the practice of medicine in the field of sudden death in infants and children. Invitations to participate will also be issued to the Centers for Disease Control (CDC) and the National Institutes of Health.

According to the Centers for Disease Control and Prevention, in 2015, about 2800 infants and 400 children died without a clear cause being identified after investigation. Sudden Unexplained Infant Death/Sudden Infant Death Syndrome (SUID/SIDS) and SUDC are age-based terms sometimes used to describe the sudden death of an infant or child which remains unexplained after a thorough case investigation is conducted and other possible causes have been ruled out. They may also be categorized as "undetermined". SUID/SIDS are used to describe deaths less than 12 months of age, and SUDC used for deaths on or after a child's first birthday.

About the SUDC Foundation
The SUDC Foundation is devoted solely to the needs of professionals and families touched by the unexpected death of a child aged 12 months or older. Since its inception, the non-profit Foundation has funded crucial research, helped hundreds of families in over 16 countries, and led many advocacy efforts, including the successful passage of the Sudden Unexpected Death Data Enhancement and Awareness Act, which was signed into law by President Obama in December 2014. For more information, visit https://sudc.org/ and follow us on Twitter @SUDC.

About the American Academy of Pediatrics
The American Academy of Pediatrics is an organization of 66,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults. For more information, visit https://www.aap.org/ and follow us on Twitter @AmerAcadPeds.

About the National Association of Medical Examiners:
The National Association of Medical Examiners (NAME) is the national professional organization of forensic pathologists, physician medical examiners, medical death investigators and death investigation system administrators who perform the official duties of the medico-legal investigation of deaths of public interest in the United States. NAME was founded in 1966 and currently has over 1000 members. For more information, visit us at: http://www.thename.org/.

*LOGO for media: Send2Press.com/mediaboom/17-0228s2p-sudc-fdn-300dpi.jpg

The SUDC Foundation, the only organization worldwide dedicated to sudden unexplained death in childhood (SUDC), has awarded nearly $100,000 to the National Association of Medical Examiners (NAME) to work collaboratively with the American Academy of Pediatrics (AAP) to investigate and establish national practice guidelines surrounding the investigations of sudden unexpected deaths in infants.

Laura Gould Crandall, Executive Director of SUDC Foundation Named 2016 Honoree of the NYU Langone Medical Center’s FACES Gala

NEW YORK, N.Y., Feb. 23, 2016 (SEND2PRESS NEWSWIRE) -- On March 7, 2016, Laura Gould Crandall, Executive Director of the SUDC Foundation and 2016 FACES Gala Honoree, actor and film producer Harrison Ford, and esteemed medical professionals will attend an exclusive evening at Pier Sixty at Chelsea Piers featuring dinner and both a live and silent auction to benefit the mission of FACES (Finding a Cure for Epilepsy and Seizures) and NYU Langone's Comprehensive Epilepsy Center.

A portion of the proceeds from FACES events are to support the funding of several outstanding research projects, including the Epilepsy Diet Program and the Human Epilepsy Project.

Laura Gould Crandall is also a research scientist in the Department of Neurology at NYU School of Medicine. Crandall's mission and subsequent honor has not been without hardship. In 1997 she lost her first child, Maria, to Sudden Unexplained Death in Childhood (SUDC) at the age of 15 months. Witnessing a breakdown in the investigative process, as well as a lack of support for the families of children who have succumbed to SUDC, she created the SUDC Foundation. SUDC works to "support families by upholding the mission of being the centralized resource for SUDC information, support, advocacy and crucial research."

With Laura's perseverance and six years of advocacy, President Obama signed into law the "The Sudden Unexpected Death Data Enhancement and Awareness Act" in December of 2014. The bill works "to improve the quality and consistency of data collected during the death scene investigations and autopsies to better inform prevention and intervention efforts related to stillbirths, Sudden Unexpected Infant Deaths (SUID) and Sudden Unexplained Death In Childhood (SUDC)."

Approximately 400 children between 1 and 18 years old die where no cause is found despite an autopsy and thorough investigation. These Sudden Unexplained Deaths in Childhood (SUDC) have completely evaded public awareness. As a third of SUDC cases have a history of febrile seizure, she has partnered with Orrin Devinsky, MD, professor and director of NYU Langone's Comprehensive Epilepsy Center to create the SUDC Registry and Research Collaborative to better understand and prevent sudden unexplained death in children. The study also help families who have suffered losses similar to her own. The NYU Langone FACES Gala recognizes Crandall this year for the important contributions she has made to the field.

About Laura Gould Crandall:

Laura Gould Crandall, MA is currently a research scientist in the Department of Neurology at NYU School of Medicine, overseeing the SUDC Registry and Research Collaborative, and President and Executive Director of the SUDC Foundation. Laura is also a licensed Physical Therapist in New Jersey and New York. She earned her undergraduate and postgraduate degrees from New York University in 1990 and 1996.

In 1997, her first child, Maria, succumbed to Sudden Unexplained Death in Childhood (SUDC) at the age of 15 months. Through the death investigation of Maria, Laura was convinced that changes in the system could and should be achieved. So, she advocated for new child death investigation legislation in New Jersey, which became law in 2000. A subsequent New Jersey law regarding research passed in 2006, and in 2014, national legislation termed "The Sudden Unexpected Death Data Enhancement and Awareness Act" was signed into law by President Obama.

At the SUDC Foundation, Laura strives to support families by upholding the mission of being the centralized resource for SUDC information, support, advocacy and crucial research. Laura's work has been important for epilepsy, because a third of SUDC cases have a history of febrile seizure. Learn more at: http://www.sudc.org/ .

About FACES:

FACES (Finding a Cure for Epilepsy and Seizures) is affiliated with NYU Langone Medical Center and its Comprehensive Epilepsy Center. FACES funds research to improve epilepsy care, advances new therapies, and fosters a supportive community for children, families and caregivers who live with the challenges of epilepsy.

The mission of FACES is to improve the quality of life for all those affected by epilepsy and seizures.

For more information on Laura and how to purchase tickets to the Faces Gala please visit this link: http://nyulangone.org/give/events/faces-gala .

About SUDC:

The Sudden Unexplained Death In Childhood (SUDC) Foundation (formerly The SUDC Foundation created in September 2001) is tasked with providing a centralized resource for information, 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 over the age of twelve months, 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 diagnosis of exclusion - given when all known and possible causes of death have been ruled out. Learn more: http://www.sudc.org/ .

* PHOTO for media: Send2Press.com/mediaboom/16-0223-LG-Crandall-300dpi.jpg
* Photo Caption: Laura Gould Crandall.

* Event Poster: Send2Press.com/mediaboom/16-0223-faces-gala-300dpi.jpg

Twitter: @SUDC - https://twitter.com/sudc .

MEDIA CONTACT:
Lorri Caffrey
The SUDC Foundation
Email: lorri[at]sudc.org
Phone: 973-239-4849

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