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Hope for HIE

@hopeforhie.org

350 followers 480 following 67 posts

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

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Hope for HIE @hopeforhie.org · Nov 14

Hi 👋— We are excited to see what happens over here and connect with our favorite #Neonatology and #ChildNeurology friends as well as #HIE families!

Hope for HIE is the premiere global patient advocacy and support org for neonatal and pediatric-acquired HIE.

🧠☀️🩵🎉

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Hope for HIE @hopeforhie.org · 4d

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

Reposted by Hope for HIE

Ali Christy, MD, PhD @oligoclonalband.medsky.social · 24d

HIE registries are so incredibly important for figuring out the best diagnostic and treatment modalities for these kids. @hopeforhie.org @betsypilon.bsky.social

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Reposted by Hope for HIE

Betsy Pilon @betsypilon.bsky.social · 23d

First ever @hopeforhie.org leadership summit ✅

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Hope for HIE @hopeforhie.org · Oct 5

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 · Sep 9

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 · Sep 3

Thanks for the support!

Hope for HIE @hopeforhie.org · Aug 4

"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...

Hope for HIE @hopeforhie.org · Jul 14

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...

Hope for HIE @hopeforhie.org · Jul 14

It was a great episode!!! Thanks for the shoutout!

Hope for HIE @hopeforhie.org · Jul 7

- HIE children across the wide range of outcomes have "good outcomes". All of our community stories are "good stories".
- HIE needs patient-centered research (not just adding us as a checkmark), validated biomarkers for #clinicaltrials, and long-term follow up guidelines

Hope for HIE @hopeforhie.org · Jul 7

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

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Reposted by Hope for HIE

Garrett M. Graff @vermontgmg.bsky.social · Jul 3

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.

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Reposted by Hope for HIE

Science Magazine @science.org · Jul 3

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

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Hope for HIE @hopeforhie.org · Jun 30

Zero inclusion of HIE families. Such a miss and harmful to the HIE community.

Hope for HIE @hopeforhie.org · Jun 30

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

Reposted by Hope for HIE

Steven M. Lazar, MD, MEd @smlazarmd.bsky.social · Jun 27

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

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Hope for HIE @hopeforhie.org · Jun 13

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

Hope for HIE @hopeforhie.org · Jun 13

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

Hope for HIE @hopeforhie.org · May 28

Thank you for this coverage — HIE is devastating and hard to prevent in many cases. In the case of COVID-caused HIE, there’s an actual intervention that can decrease the incidence. This will harm more women and babies.

Hope for HIE @hopeforhie.org · May 28

Many are international so at least there’s some protection of the science.

Hope for HIE @hopeforhie.org · May 27

There are significant, high-powered data showing COVID vaccination in pregnancy reduces COVID-caused prematurity, stillbirth and HIE during pregnancy, protecting mom, baby and placental health leading to better outcomes than non-vaccinated.

Reducing the incidence and impact of HIE is essential.

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Hope for HIE @hopeforhie.org · May 27

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 @acog.org · May 27

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

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Hope for HIE @hopeforhie.org · May 20

Screening has to be matched with support, therapy and resources. Most families in our community are acutely aware of the trauma they are experiencing. Long-term mental health treatment and continued support is essential to do something about it.

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Reposted by Hope for HIE

Pia Wintermark @piawintermark.bsky.social · May 17

🌟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
! 👶🧠🇨🇦

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Hope for HIE @hopeforhie.org · May 15

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 ...