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

First ever @hopeforhie.org leadership summit ✅

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

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...

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

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

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.

🌟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...

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

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

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

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

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

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

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.

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

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...

#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

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

"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-...

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

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.

Off we go! 🧠✈️☀️🎉 #HaveHOPEwilltravel #NewbornBrains #HopeforHIE #NeoSky #NeuroSky #NICU #HIE

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

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

Our own @amoise313.bsky.social & Medical Advisory Board member Dr. Monica Lemmon are participating in this upcoming webinar through @courageousparentsnetwork.org! courageousparentsnetwork.org/events/being... #NeoSky #NeuroSky #PatientAdvocacy #NICU #FCC

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

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

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

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

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!

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.

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

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

Medical students interested in child neurology or neurodevelopmental disabilities - Consider applying for Child Neurology Foundation grants! ❤️🧸🧠 Please share this with every medical student you know!