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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Dr. Aaron Nelson @pedsneuromd.nyc · 27/01/2026

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”

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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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Ali Christy, MD, PhD @oligoclonalband.medsky.social · 11/10/2025

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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Betsy Pilon @betsypilon.bsky.social · 12/10/2025

First ever @hopeforhie.org leadership summit ✅

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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 · 07/07/2025

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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Garrett M. Graff @vermontgmg.bsky.social · 03/07/2025

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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Science Magazine @science.org · 03/07/2025

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

scim.ag

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

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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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Steven M. Lazar, MD, MEd @smlazarmd.bsky.social · 27/06/2025

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...

podcasts.apple.com

A Neurological look at Autism & ADHD, with Dr Steven Lazar

Podcast Episode · The Broken Brain · 06/25/2025 · 57m

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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 · 27/05/2025

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.

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Pia Wintermark @piawintermark.bsky.social · 17/05/2025

🌟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 · 08/05/2025

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

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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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CHNC @thechnc.bsky.social · 29/04/2025

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

bit.ly

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.

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Sheila Razdan, MD, MPH (she/her) @sheilarazdan.bsky.social · 27/04/2025

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

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Sarah Swenson @neodrswenson.bsky.social · 09/04/2025

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

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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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Jamie Daw @jamiedaw.bsky.social · 11/03/2025

I received one of the 232 NIH grant "terminations" sent to scientists at Columbia last night. My research focuses on improving maternal and child health in the US. Also affected: ongoing clinical trials, research training programs, and research centers that aim to improve the health of Americans.

gothamist.com

Hundreds of research grants at Columbia canceled following Trump edict, administrator says

The National Institutes of Health is terminating 232 grants for scientific research at Columbia University Irving Medical Center, according to an email an administrator sent to faculty.

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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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Betsy Pilon @betsypilon.bsky.social · 13/03/2025

For anyone in or around #NYC on June 26th, please consider attending and supporting this incredible piece by fellow @hopeforhie.org parent, Laura Sanchez. "Welcome to Holland?" is in reference to a popular poem about raising a child with disabilities. www.eventbrite.com/e/welcome-to...

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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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Stand Up for Science! @standupforscience.net · 01/03/2025

"NIH employees 'are individuals of extraordinary intellect and integrity, selfless and hard-working, generous and compassionate. They personify excellence in every way and they deserve the utmost respect and support of all Americans,' Collins wrote." apnews.com/article/nih-...

apnews.com

Renowned geneticist Francis Collins retires from NIH, urging 'respect' for embattled workers

Dr. Francis Collins, a renowned geneticist, and former longtime director of the National Institutes of Health, is retiring from the government agency and urging “respect” for its embattled workers.

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Hope for HIE @hopeforhie.org · 24/02/2025

Being asked to comment on dissemination strategies for enrolled families TODAY on a study that publicly published TODAY (and data presented last year at PAS) is... something. We must do better. #ThinkAhead #ParentsasPartners #NeoSky #NeuroSky #NICU

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Cerebral Palsy Research Network @cprn-org.bsky.social · 20/02/2025

Loving @hopeforhie.org luncheon workshop on starting the conversation on guidelines for NICU discharge and follow up for kids with #HIE during #newbornbrains annual meeting.

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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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Sarah Swenson @neodrswenson.bsky.social · 28/01/2025

I think it was @betsypilon.bsky.social @hopeforhie.org who said “celebrate all the inch stones”- we really need to make sure follow up care for NICU grads is family centered

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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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Monica Carson @brainimmunity.bsky.social · 22/01/2025

#nih #neuroskyence #immunosky #academicsky contact your house representatives and senators. Research is an economic driver in many regions of this country! Please act!

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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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Perinatal Research Center Colorado @perinatresearchco.bsky.social · 13/01/2025

Excited to share our science here! @cuanschutz.bsky.social @cctsi.bsky.social @childrenscolo.bsky.social @cudeptofmedicine.bsky.social @hopeforhie.org Please amplify so we can spread our messages of hope for babies!

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Hope for HIE @hopeforhie.org · 12/01/2025

There are codes for HIE, and have been for a long time, but they are not used consistently. Establishing guidelines and implementing QI will improve the “diagnosis by exclusion” issue we currently have in real-world data.

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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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