iiinova — where your digital self keeps evolving

Hope for HIE @hopeforhie.org · 27/01/2026

The much-anticipated @AmerAcadPeds COFN guidelines for #TherapeuticHypothermia published yesterday. Here is #HopeforHIE's position statement: Tinyurl.com/AAPcoolingstatement

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Hope for HIE @hopeforhie.org · 05/11/2025

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

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Hope for HIE @hopeforhie.org · 31/10/2025

From our patch to yours, have a safe, fun and INCLUSIVE Halloween! 🎃🎃🎃🎃🎃🎃

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Hope for HIE @hopeforhie.org · 05/10/2025

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

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Hope for HIE @hopeforhie.org · 09/09/2025

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

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Hope for HIE @hopeforhie.org · 04/08/2025

"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...

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Hope for HIE @hopeforhie.org · 14/07/2025

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...

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Hope for HIE @hopeforhie.org · 30/06/2025

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

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Hope for HIE @hopeforhie.org · 13/06/2025

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

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Hope for HIE @hopeforhie.org · 13/06/2025

We are thrilled to welcome Maggie Jalowsky to our team in the Clinical Research Program Manager role! Maggie comes to us with exceptional experience in building research and advocacy platforms with organizations like Children's National, PCORI, & most recently Sick Cells. #NeoSky #NeuroSky #NICU

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Hope for HIE @hopeforhie.org · 02/05/2025

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

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Hope for HIE @hopeforhie.org · 01/05/2025

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

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Hope for HIE @hopeforhie.org · 06/04/2025

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

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Hope for HIE @hopeforhie.org · 02/04/2025

April is #HIEAwarenessMonth and this year, more than ever, we are moving #HopeinAction -- join us! HIEawarenessmonth.com #NeoSKy #NeuroSky #NICU #HopeforHIE #HIE #Neonatology #ChildNeurology

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Hope for HIE @hopeforhie.org · 19/03/2025

It's #Neurodiversity Celebration Week, and ALL BRAINS ARE BEAUTIFUL! 🧠🌷🌼💐 Every brain is unique, powerful, worthy of understanding & support. Whether thinking, learning, moving, or communicating in different ways, every journey with #HIE has beauty with it. #NeoSky #NeuroSky #NICU #PICU

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Hope for HIE @hopeforhie.org · 16/03/2025

Allison Moise, BSW, our Peer Support Coordinator, is at the National Epilepsy Walk and a part of the first cohort of epilepsy research ambassadors going through training today! She ran into Ilene Miller from @rareepilepsy.bsky.social today, too! #NeuroSky #Epilepsy #Advocacy

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Hope for HIE @hopeforhie.org · 07/03/2025

#HIEAwarenessMonth IS COMING! APRIL IS RIGHT AROUND THE CORNER! We are excited to announce our annual global theme for 2025: #HopeinAction! Head to HIEawarenessmonth.com for more information on events, ways to get involved, swag, and more! #NeoSky #NeuroSky #NICU #PICU #HopeforHIE #EBNEO

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Hope for HIE @hopeforhie.org · 05/03/2025

And 🐑 🐖 🐇 🧫🪰🐟 models…but had to call out mice given the misinformation from last night’s address. #NeoSky #NeuroSky #NIH

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Hope for HIE @hopeforhie.org · 09/02/2025

Cheering on HIE dad Parris Campbell & the Eagles today! 🏈☀️🧠🎉 nypost.com/2023/08/05/g... #NeoSky #NeuroSky #NICU #Superbowl

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Hope for HIE @hopeforhie.org · 31/01/2025

We are steadfast in advocacy to protect and advance science, research, healthcare, education, and disability rights in the US and beyond: www.hopeforhie.org/hope-for-hie... #PatientAdvocacy #NeoSky #NeuroSky #DisabilityRights #Ableism

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Hope for HIE @hopeforhie.org · 27/01/2025

February support groups: Registration available at Hopeforhie.org/events #NeoSky #NeuroSky #HopeforHIE #NICU

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Hope for HIE @hopeforhie.org · 16/01/2025

We are thrilled to introduce everyone to Jen Schaefer, CAPSW, our new social worker, and celebrate the expanded role @amoise313.bsky.social has taken on with us! Learn more: www.hopeforhie.org/hope-for-hie... #NeoSky #NeuroSky #NICU #HopeforHIE #PatientAdvocacy

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Hope for HIE @hopeforhie.org · 09/01/2025

Our community is focused on our impacted HIE families in California. Annie Gunning, our child life specialist, put together resources to help children & families cope and is available for 1:1 support & coping plan consults. www.hopeforhie.org/facing-natur... #NeoSky #NeuroSky #HopeforHIE

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Hope for HIE @hopeforhie.org · 23/12/2024

It's been an INCREDIBLE YEAR -- check out our 2024 Wrapped on YouTube (BS only offers :60 videos): www.youtube.com/watch?v=OcKd... #NeoSky #NeuroSky #PatientAdvocacy #HopeforHIE #NICU

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Hope for HIE @hopeforhie.org · 16/12/2024

We're so grateful to the Clapsaddle Family, who are sponsoring our much-loved Holiday Giveaway program for our global community in loving memory of their daughter, Claire, this year. Help extend this generosity and give in Claire's memory at hopeforhie.org/donate. #NeoSky #ChildLoss #GiveHope

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Hope for HIE @hopeforhie.org · 08/12/2024

Dr Jahir Afifi kicking off the full term QI sessions — a champion for #HIE babies and families. She is also a member of the @NewbornBrains common data elements workgroup, working towards improved data collection for NE/HIE. #NeoSky #NeuroSky #NICU

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Hope for HIE @hopeforhie.org · 05/12/2024

As an Offensive Assistant Coach for the @sanfrancisco49ers.bsky.social, Jordan Hogan & his wife, Kayla, chose us for the @nflbluesky.bsky.social's #MyCauseMyCleats initiative, honoring their daughter Mila. Tinyurl.com/HoganFamilySpotlight #GiveHope #49ers #49ersfaithful #NFL #NeoSKy #NeuroSky

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Hope for HIE @hopeforhie.org · 05/12/2024

One of our sweet families shared this photo yesterday in their matching Hope gear. #NeoSky #NeuroSky #NICU #HopeforHIE #HopeintheJourney

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Hope for HIE @hopeforhie.org · 03/12/2024

We have the most amazing community. Help us help more families! Hopeforhie.org/donate #NeoSky #NeuroSky #NICU #HopeforHIE #MedSky #PatientAdvocacy (Let’s see how videos post to BlueSky!) 🤞

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Hope for HIE @hopeforhie.org · 03/12/2024

Join us today, #GivingTuesday, as we empower HIE families in their journey! Hopeforhie.org/donate #NeoSky #NeuroSky #HopeforHIE #PatientAdvocacy #NICU

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Hope for HIE @hopeforhie.org · 03/12/2024

#GivingTuesday -- there are a myriad of causes, and we hope you'll consider supporting ours at Hopeforhie.org/donate #NeoSKy #NeuroSky #PatientAdvocacy #HopeforHIE

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Hope for HIE @hopeforhie.org · 02/12/2024

Missed the #NeonatalSIG at @childneurosoc.bsky.social? We're continuing the conversation at the Newborn Brain Society conference in February. Learn more and register below! newbornbrainsociety.org/conferences #NeoSky #NeuroSky #NewbornBrains #HopeforHIE

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Hope for HIE @hopeforhie.org · 02/12/2024

#ISAW2024 - Since #HIE is the 2nd leading cause of #InfantileSpasms, we have a significant emphasis on education for newly diagnosed HIE families. In conjunction with leaders of the #NeonatalSIG at @childneurosoc.bsky.social, we surveyed families and have a lot of work to do! Join in!

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Hope for HIE @hopeforhie.org · 22/11/2024

The #AAP spotlighted #CVI today — #HIE is the top cause. Screening, diagnosis and management is scant. Here’s to change ahead! #QI publications.aap.org/aapnews/news... #NeoSky #NeuroSky #HopeforHIE #OphthalmologySky ?

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Hope for HIE @hopeforhie.org · 21/11/2024

Just published from the #NeonatalSeizureRegistry group! Sleep outcomes at 5 years old... and no surprise, there are some impacts, and across varying outcomes. www.hopeforhie.org/sleep-outcom... #NeoSky #NeuroSky #NeonatalSeizures #Sleep #Neurodevelopment #LongTermOutcomes

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Hope for HIE @hopeforhie.org · 19/11/2024

Join us tonight - Tues Nov 19 at 8 pm EST — tinyurl.com/hieregistryw... 🧠🧠🧠☀️☀️☀️ #NeoSky #NeuroSky #HIE #CerebralPalsy #PatientAdvocacy

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