The much-anticipated @AmerAcadPeds COFN guidelines for #TherapeuticHypothermia published yesterday. Here is #HopeforHIE's position statement: Tinyurl.com/AAPcoolingstatement
Hope for HIE
@hopeforhie.org
Hope for HIE is the global charity improving quality of life for families impacted by neonatal & pediatric acquired HIE through awareness, advocacy, education, research and support. #NeoSky #NeuroSky #HopeforHIE
Thrilled to have @drbhooma.bsky.social, MD, Medical and Research Director of the Cerebral Palsy and Mobility Center @washuneurology.bsky.social speaking in-person at our NYUGSoM Child Neurology Grand Rounds, delivering a great overview of: “Diagnosis and Treatment of Dystonia in Cerebral Palsy”
Growing Hope! Welcome to our new staff members: Mary Boyle - Program Manager Jacquelline Garborg - Communication Coordinator Read more about their roles and expertise: hopeforhie.org/hope-for-hie... #NeoSky #NeuroSky #PatientAdvocacy #HopeforHIE
From our patch to yours, have a safe, fun and INCLUSIVE Halloween! 🎃🎃🎃🎃🎃🎃
HIE registries are so incredibly important for figuring out the best diagnostic and treatment modalities for these kids. @hopeforhie.org @betsypilon.bsky.social
We have a lot of swifties in our community, so to celebrate the latest album, we've curated a 🎵Life of a HIE Parent Playlist (Taylor’s Version 😉). Listen over on our YouTube channel: www.youtube.com/playlist?lis... #NeoSky #NeuroSky #NICU #HopeforHIE #HIE #PICU #PatientAdvocacy
Excited to announce our formalized partnership as Neuren advances its NNZ-2591 for neonatal HIE. Read more: www.neurenpharma.com/pdf/cbb30d08... #HopeforHIE #Neonatology #ChildNeurology #NeoSky #NeuroSky
"When I was a coach before having kids, I taught my students to celebrate every win. Plenty of other coaches disagreed with that approach, but it has served me well in parenting my child with HIE." - @betsypilon.bsky.social, Executive Director Read more: hopeforhie.org/we-celebrate...
Neonatal HIE is synonymous with #BirthTrauma. The impacts are felt long after discharge from the #NICU. Families and providers can work on decreasing that impact in different ways. Learn more: hopeforhie.org/birth-trauma...
Here's your weekly reminder: - HIE families deserve a confirmed diagnosis of HIE for their children, made in the #NICU, not reading it in the discharge summary - HIE patient-family stakeholders should be included in any policymaking for #neonatology, and especially when it directly impacts HIE
The thing I can’t get over is this bill makes life better in America for almost no one. It almost solely benefits billionaires and oil companies. Almost every other American will be worse off, some direly so.
The National Institutes of Health has softened a controversial change to its foreign funding policy that had put many clinical trials abroad in limbo. scim.ag/4l4wypU
NIH restores grants to South Africa scientists, adds funding option for other halted foreign projects
A policy tweak to the ban on foreign “subawards” should allow clinical trials worldwide to continue
scim.ag
The latest @lancetchildadol.bsky.social work published on the future of #neonatology. HIE is mentioned roughly 15 times. ZERO HIE lived experience included, 20+ preemie parents included. It's truly astonishing & harmful for our community. We cannot endorse this work. #NeoSky #NeuroSky
I did a thing! Hear me wax poetically (aka ramble) on topics such as #neurodiversity, #autism, #adhd and #disability and society. A little shoutout to @hopeforhie.org in there as well… podcasts.apple.com/us/podcast/t...
A Neurological look at Autism & ADHD, with Dr Steven Lazar
Podcast Episode · The Broken Brain · 06/25/2025 · 57m
podcasts.apple.com
We are excited to announce our new Medical Advisory Board leadership effective June 1, 2025 serving two year terms each: Dr. Alexa Craig, Chair Dr. @briankalishmd.bsky.social,Vice Chair #HopeforHIE #NICU #NeoSky #NeuroSky
There are significant, high-powered data sets showing that COVID vaccination in pregnancy reduces COVID-caused prematurity, stillbirth and HIE during pregnancy, protecting mom, baby and placental health. Reducing the incidence and impact of HIE is essential.
ACOG is deeply disappointed by HHS’s move to drop COVID-19 vaccine recommendations in pregnancy. The science is clear: COVID-19 remains dangerous in pregnancy and vaccination protects both patients and newborns. The vaccine is safe and protects families. Read our full statement: buff.ly/OGue7sO
🌟We have BIG news! 🌟 The NECTAr platform — a pan-Canadian initiative to transform care and research for babies with hypoxic-ischemic encephalopathy (HIE) — has received funding from @braincanada.bsky.social and the Courtois Foundation through the Montreal Children’s Hospital Foundation ! 👶🧠🇨🇦
COOL PRIME in the news! Love to see CHLA as a cooling center! #NeoSky #NeuroSky #NICU #HopeforHIE www.newswise.com/articles/stu...
Study Tests Therapeutic Cooling for Babies With Mild Hypoxic Ischemic Encephalopathy | Newswise
It’s well known that therapeutic hypothermia can benefit babies with moderate to severe hypoxic ischemic encephalopathy (HIE)—a brain injury caused by a lack of oxygen and blood flow that can lead to ...
newswise.com
Keep climbing and celebrate every inchstone! 🧠☀️🩵 #HopeforHIE #NeoSky #NeuroSky #NICU #NewbornBrains #BabiesNeedScience
Congratulations to HFH Board Member and incredible HIE researcher, Dr. Danielle Barber for this outstanding funding by the @hypothesisfund.bsky.social to advance critically needed research for #HIE! We're biased, but she's truly the best. #NeoSky #NeuroSky #HopeforHIE
2/ Awardee Danielle Guez Barber will examine how blood & brain macrophages impact the severity of hypoxic-ischemic brain🧠 injury. Her work may be key to addressing the 2nd leading cause of neonatal death & disability. 🍾 Congrats Dr. Guez Barber! @cudeptofmedicine.bsky.social 🙏 #HFScout Kay Tye
MAY NEWSLETTER NOW AVAILABLE! 📌 HIE Awareness Month wrap-up 📌 Family Reflections 📌 HIE Global Research Task Force 📌 SOAR & SuperSibs Virtual Tour 📌 Mental Health in May 📌 MRI Educational Resources 📌 OnDemand Peer Support Program Read more: conta.cc/44nZwM8 #NeoSky #NeuroSky #NICU #PedsICU
A perfect way to wrap #HIEawarenessmonth & transition to #MentalHealthAwarenessMonth -- "The Story Doesn't End When the Hospital Bracelet Comes Off" hopeforhie.org/the-story-do... #NICU #NeuroNICU #NeoTwitter #NeuroTwitter #BabiesNeedScience
For #HIEAwarenessMonth we are sharing some of the ways our #HIE Focus Group is working to help babies with HIE, including a paper aiming to determine NDFU practices across academic centers. bit.ly/3YbU9eQ #HopeinAction #CHNCFocusGroups #neosky @hopeforhie.org
Hypoxic Ischemic Encephalopathy | Focus Group | CHNC
The HIE Focus Group leverages the CHND to investigate clinical practice and patient-specific factors to improve outcomes in neonatal HIE.
bit.ly
Current @stanfordmedicine.bsky.social NICU fellow, future @ucsfchildrens.bsky.social @zsfgcare.bsky.social neonatologist, & new mom (!!), Dr Danielle Sharp found disparities when looking at the maternal vulnerability index and #HIE and #cooling. #pas2025 @hopeforhie.org
Check out @neonatalresearch.bsky.social summaries, including Fox et al on holding while cooling - “Mothers in the cuddling group had lowered cortisol, as did their infants, who also showed lower, stable heart rate and respiratory rate, without desaturation, or temperature problems” @hopeforhie.org
Neonatal Research Shorts : April 2025 I used to do a series of shorter posts called "weekly updates" but I ran out of steam and have concentrated on longer posts in recent years. The last couple of weeks, with clinical service, I have had less time for a longer post, but a few things piqued my…
Now Hiring! Clinical Research Program Manager: - 15-25 hours/week - Remote - Flexible hours - Exciting work! Would love someone with academic neonatal or pediatric neurology experience! www.linkedin.com/jobs/view/42... #NeoSky #NeuroSky #NIH #FDA #CDC
Hope for HIE (Hypoxic Ischemic Encephalopathy) hiring Clinical Research Project Manager in United States | LinkedIn
Posted 4:16:27 PM. Hope for HIE is seeking a part-time Clinical Research Program Manager to serve our community of…See this and similar jobs on LinkedIn.
linkedin.com
Betsy Pilon, #HopeforHIE executive director, and family started their #HustleforHope run club to prep for the Detroit area event May 4th! Find one near you, or register for the virtual event at Tinyurl.com/hustleforhope #NeuroSky #HopeinAction #HIE #NeoSky #HIEawareness #CerebralPalsy #NICU
April is #HIEAwarenessMonth and this year, more than ever, we are moving #HopeinAction -- join us! HIEawarenessmonth.com #NeoSKy #NeuroSky #NICU #HopeforHIE #HIE #Neonatology #ChildNeurology