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SUDC Insights

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SUDC Insights is the official blog of the SUDC Foundation which shares and discusses issues important to the understanding and the ultimate prevention of SUDC. If you have questions or issues you would like to see addressed in SUDC Insights, please let us know at sudcinsights@sudc.org.

Why SUDC Awareness is Important to Us

As we all continue to cope with the worldwide pandemic, we are encouraged by the dedication our supporters have continued to devote to SUDC Awareness Month 2020 while facing the challenges and uncertainty that surround us. We are so grateful to everyone who has helped us hold tight together as a community and found creative ways to take part in activities to raise awareness of SUDC and remember the children gone far too soon. 


The theme for the last week of the month is “Why SUDC Awareness is Important to Me,” which offers our community an opportunity to recall their efforts for the month and reflect on how raising awareness impacts their lives.


The SUDC Foundation represents a community with many stories, but one shared voice. The story of each child, the experience of each family and the voice of every SUDC supporter hold the key to creating a world free of SUDC. With that in mind, we asked each member of our staff and board of directors to share with us why SUDC awareness is important to them. 
 

Our accomplishments in 2019 were possible because of you.

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Thank you so much for your support in 2019.Through the generosity of our supporters, the SUDC Foundation continued to advance our mission of promoting awareness, advocating for research, and supporting those affected by sudden unexpected or unexplained death in childhood. I would love to share some of this year’s highlights with you. 

1,000

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It’s a number I never thought possible. When my daughter Maria died during a nap, I was told the tragedy of her death was unique. After all, toddlers don’t just die without a reason found, right? Babies do. Young infants do. I was well versed in the tragic statistics of sudden infant death and the risk reduction measures advocated by the American Academy of Pediatrics. But walking, talking, high-energy and exuberantly happy toddlers? No, they don’t just die inexplicably.

Insight from the 2019 Annual Meeting of the National Association of Medical Examiners

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For over 15 years, the SUDC Foundation hasn’t missed the opportunity to attend the National Association of Medical Examiner’s (NAME) meeting. In order to achieve our mission to support those who have suffered the sudden, unexpected death of a child, we first need to connect with them. Medical examiners play a critical role by referring them to us. While pediatric and other medical professionals may be in contact with these bereaved families after the death of their child, medical examiners and coroners most definitely will be. Equally important, we rely on medical examiners and coroners to complete comprehensive investigations and gather crucial data to identify the most accurate causes of death for these children.

Understanding "Cause" and "Manner" of Death

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Among other functions, the medical examiner or coroner is responsible for investigating sudden and unexpected deaths and completing a medicolegal death investigation. Part of that investigation will include completing a death certificate which includes information about the person who died as well as the investigation’s determined “cause” and "manner” of death for that individual. 

Understanding Genetics Part 3: Not All Genetic Testing is the Same – Understanding TSP, WES, and WGS

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All "genetic testing" is not created equal. Genetic tests, just like the multitude of medical tests your physician may choose to order when you are sick, have their advantages and disadvantages as well as their indications and contraindications. If someone says. "I did genetic testing and it did not identify the cause of the death", it doesn't really convey valuable information or guidance to the receiver of that information. 

The SUDC Foundation Family Retreat – from an SUDC Parent and Board Member’s Perspective

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We live in St Paul, Minnesota, with our 7-year-old daughter, Elianna. We had never heard of SUDC before November 2016 when we lost our 3-year-old daughter, Vivienne, suddenly and without explanation. Thankfully, several people reached out to us pointing us to the SUDC Foundation. We attended the SUDC Foundation’s first-ever Family Retreat in Naples, Florida, last year, where we found great comfort in spending time with other families like ours. 

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