BetsyP

Hope for HIE is the premiere global organization dedicated to improving the quality of life for children and families impacted by HIE. Over the last several years, we've grown our comprehensive peer-to-peer support network to serve over 6,000 families worldwide across all ages, stages, outcomes and locations. We have been aggressively building out new educational content in collaboration with our Medical Advisory Board, and also offer printable materials, newly diagnosed family support boxes for point of diagnosis that you can request at any time, and more that can be accessed through our website and social media channels. We are always eager to collaborate for improved care, communication and connection for our families. We know that the earlier they are given information, the more empowered they are to help their children reach their fullest potential. While disability continues to be pervasive, our families typically just need the resources to help them achieve their best lives with their children who, no matter what level of disability, bring immense value and love to the world. We look forward to partnering with you! Questions? Want to connect? Email me at betsy@hopeforhie.org Betsy Pilon, Executive Director

This trauma is definitely not just related to prematurity. In fact, HIE family trauma is exacerbated due to the narrative surrounding NICU as only a preemie place, combined with many times a lack of connection to HIE-specific resources, or even naming the diagnosis. We've recently launched more resources for NICU clinicians to help explain and connect parents. We know that when parents are empowered, their babies have better outcomes. Our HIE NICU experience handout is available in six languages, with six more in the works. We've relaunched our website and will be continually filling with additional educational materials vetted by our multidisciplinary Medical Advisory Board.

Join experts in the field of neonatal neurology as they speak on clinical and research guidelines, educate on new techniques, and answer your questions! April Speakers: April 2nd: Betsy Pilon - Supporting HIE Families April 9th: Seetha Shankaran, MD - Hypothermia for HIE, Updates and Controversies April 16th: Gerda Meijler, MD - Neonatal Head Ultrasonography: How to Scan a Baby, Normal Anatomy of the Neonatal Brain April 23rd: Linda de Vries, MD - Neuroimaging in the Full Term Infant April 30th: Trainee Session RSVP below to confirm your attendance: https://is.gd/RSVP_NBS_Ed_Webinar_April_2 Contact info@newbornbrainsociety.org with any questions.

Membership Information can be found at newbornbrainsociety.org/membership. Hope you can join us!

A collective of the world’s leading newborn brain care providers have come together and launched the https://newbornbrainsociety.org/ (NBS). This new organization is focused on advancing newborn brain care through international multidisciplinary collaboration, education, and innovation. With founding leadership representation from prestigious programs such as Yale, Duke, Harvard, and UCSF, international representation from Canada, Brazil, and Ireland, and parent collaboration through the Hope for HIE Foundation, the goal is to bring together the resources of many programs to move the field forward in previously unattainable ways. “We started this idea originally through an existing group that was started in 2015 through the Neonatal Neuro Critical Care Special Interest Group (NNCC-SIG). We wanted to facilitate multidisciplinary, international collaboration between clinicians, parents, scientists, and others with a focus on newborn brain care; and no other society or organization currently exists in this structure and philosophy,” stated Mohamed El-Dib, MD, founding member and President of the organization. NBS has plans to sponsor, host and participate in educational events that will expand the field of neonatal neurocritical and neuroprotective care, and develop consensus publications including best practice guidelines and expert opinions in the field of newborn brain care. “We are also looking to provide a platform for members to exchange clinical practice guidelines and parent resources related to newborn brain care, and to support multi-center collaborative activities, quality improvement and research projects related to the field of neonatal neurology and brain development,” stated Donna Ferriero, MD, MS, chair of the NBS Steering Committee. Membership is now open for interested clinicians, researchers, trainees, parents and other community members. For more information, visit Newbornbrainsociety.org

I'll be on the panel for this satellite symposium event. Hope to connect with you! http://www.hottopicsinneonatology.org/Pape_flyer_2016--blue.pdf

Hope for HIE is a worldwide nonprofit organization serving families whose children have been diagnosed with or experienced HIE at birth or sometime during early childhood. We have a comprehensive support network providing much-needed psychosocial support. We are also committed to working with neonatal and postnatal providers to help connect families, participate in any research studies and provide educational materials. If you are interested in receiving our materials (we ship them worldwide!), please submit a request to our Vice President of Professional Outreach at http://www.hopeforhie.org/requestmaterials Please let me know if you have any thoughts of ways you wish to collaborate, or questions that I can answer from this parental perspective. Sincerely, Betsy Pilon, President, Hope for HIE HopeforHIE.org Facebook.com/hopeforhie Consider joining our group for networking professionals: https://www.facebook.com/groups/hopeforhieprofessionals/

Good afternoon! I wanted to reach out to you to let you know Hope for HIE has developed and published some educational materials for families and professionals. We have them available in two ways - downloadable from our website, or requestable through our website, worldwide. We would love to get these in the hands of as many NICU and PICU providers as we can to help families sooner than ever before, so that nobody has to face a diagnosis of HIE alone. To view the printable resources, click here: http://www.hopeforhie.org/printableresources To request printed resources, click here: http://www.hopeforhie.org/requestmaterials Please let me know if there are any other ways we can work together! Sincerely, Betsy Pilon (betsy@hopeforhie.org)

Very interesting. Many families in Hope for HIE have experienced APGARS after 10 minutes of zero and have come through. Some with lasting impacts, some not.