01 May Our Accomplishments in 2019 Were Possible Because of You
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.
2019 was a pinnacle year for the Sudden Unexplained Death in Pediatrics Project. The project was made possible through a scientific grant from the SUDC Foundation to the National Association of Medical Examiners to work collaboratively with the American Academy of Pediatrics. The project was tasked to create research-based national practice guidelines surrounding the investigations, certification, research needs and the sensitive care of families for sudden, unexpected deaths in infants and young children. The guidelines will be published in a book next month, offering essential guidance for those professionals working in the aftermath of these tragedies. The Foundation is grateful to all the experts who volunteered to accomplish this monumental undertaking, especially the editors, Dr. Elizabeth Bundock and Dr. Tracey Corey. You can learn more about Unexplained Pediatric Deaths: Investigations, Certification and Family Needs at sudpeds.com.
We launched our medical education strategic initiative at Dartmouth University in September, led by Dr. Erin Bowen. Erin is an SUDC parent, Pediatrician and member of the SUDC Foundation’s Board of Directors and our team of SUDC Medical Ambassadors. The initiative will provide direct medical education at academic medical centers and related medical conferences.
We provided resources to help medical examiners, coroners, pediatricians and other doctors care for and communicate with families experiencing the sudden unexpected and unexplained loss of a child. The SUDC Medical Ambassadors revamped our “Caring for the SUDC Family: Medical and Bereavement Information for the Clinician’s Consideration”. You can reach it here.
Our newly updated “Help For Families” brochure is available to be customized and printed for any medical examiner or coroner office- free of charge. An office can order one here.
We provided SUDC education through exhibits at the National Association of Medical Examiners annual meeting and the national annual meeting of the American Academy of Pediatrics.
We educated and advocated for the needs of SUDC community through legislative efforts to ensure comprehensive and standardized death investigations. In November, we took our concerns directly to Washington, DC and educated our federal policymakers on current legislation under their review like Scarlett’s Sunshine Act.
Our SUDC Scientific Advisory Board continues to grow, with our most recent member, Dr Marta Cohen. We are pleased to announce our newest SUDC Foundation Scientific Advisory Board member, Professor Marta Cohen MD, consultant pediatric pathologist at Sheffield Children’s Hospital in the UK. We are grateful for the expertise they so willingly share to support SUDC awareness, advocacy and research. Our full list of current members, can be found here.
The SUDC Foundation Ambassador Volunteer program continues to grow and makes strides in awareness. We are so grateful for their coordinated efforts. We now have 109 members, who have completed 118 awareness activities in 2019 alone! You can learn more about the Ambassador program here.
The SUDC Foundation continues to spread awareness through the growing impact on social media. We now have channels on LinkedIn, Twitter, Instagram, YouTube and Facebook. We are just 30 “likes” shy of 20,000 supporters on our Facebook page, please help put us over the edge before 2020 by “liking us”, here. All of our social media channels provide you additional ways to easily stay in touch with the many happenings here at the Foundation and how you can get involved. You can access them all at sudc.org.
Advocating for Research:
We awarded a $275,000 scientific grant to the SUDC Registry and Research Collaborative at New York University Langone Health. This grant funded research to increase our understanding of the deaths of children 11 months through 18 years who have died suddenly and unexpectedly, and, in some instances, without explanation to understand risk factors and causes and develop preventive measures. The registry is now the largest registry of SUDC cases in the world. We are privileged to support this multi-centered project with more than 25 multidisciplinary co-investigators.
Our affiliate, SUDC UK, which launched in 2017 has been successfully fundraising for research and was able to provide $50K to the SUDC Foundation to further support our research grant efforts.
Supporting those affected by Sudden Unexpected and Unexplained Death in Childhood:
In 2019, we served more than 95 new families affected by the sudden death of a child and crossed the surreal landmark of serving our 1,000th family since our inception. This was a profound realization for me which I wrote out in our recent blog.
We are now supporting families in 21 countries, with bereavement support services coordinated by our social worker. Our unique range of services ensure that no one grieves alone.
Our closed Family Support Group on Facebook increased it’s membership by over 30% and now boasts over 400 family members providing and receiving support from their peers 24/7 and moderated by SUDC Foundation staff.
We held our second annual SUDC Family Retreat in Phoenix, Arizona. Over 200 family members attended the weekend of activities to restore, reconnect and renew. About 90 of the participants were children, who had lost a brother or sister to a sudden unexplained death. You can learn more and see photos from the weekend, here.
In 2019, individual supporters demonstrated a deep commitment for the work we do, reflected by ninety one percent of total funding resulting from private donations. The financial support received from so many, is responsible for the direct impact on the continued success of the Foundation and is an inspiration to our dedicated staff.
We end 2019 in gratitude for everything we have been able to accomplish, and we reflect on the stories of precious children who have touched our hearts. We look forward with determination to attain our 2020 goals. We hope you will continue with us as we strive to achieve a future free of SUDC.
On behalf of the SUDC Foundation’s Board of Directors and our staff, thank you so very much. We wish you a Happy New Year filled with good health, peace and happiness.
Laura Gould Crandall, MA
Co-Founder & President (retired)