Hand to heart.

@aapneonatal.bsky.social @ameracadpeds.bsky.social

Not sure about anyone else, but at @hopeforhie.org we don't do (and I quote) "wink wink, nudge nudge" partnerships in therapeutic advancement. If it doesn't work for, or include, our families, we don't endorse it. Full stop. Not enough coffee for that this morning.

SELECT ITEMS FROM HOPE FOR HIE'S CAFEPRESS STORE ARE 50% OFF TODAY! Grab some swag! www.cafepress.com/profile/Hope... @hopeforhie.org

I was asked if I wanted to attend mouse surgery next week. I think this may take my non-scientist HIE street cred over the top. 🐁🧠 #NeoSky #NeuroSky #NICU #HopeforHIE #HIE #BasicScience #PatientAdvocacy

A new study shows that COVID19 during pregnancy was associated with a significant increase in the odds of neurodevelopmental conditions in offspring. This supports literature suggesting that infections during pregnancy can increase the odds of ASD in offspring. It also supports vaccination.

First ever @hopeforhie.org leadership summit ✅

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

With some of my favorite 🧠 peeps. #CNSAM

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

Soaking up every moment of bonus summer. The water is holding at 74/75.

Citing concerns about DEI, the Department of Education has halted funding for programs that support students with combined hearing and vision loss in eight states. “How low can you go?” one advocate asked. “How can you do this to children?” By @jodiscohen.bsky.social @jsmithrichards.bsky.social

"I'm sick of living like this" is always met with flagrant responses of "THEN MOVE" instead of "let's change this together". Like, if you aren't sick of living like this, how morally broken are you???

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

Am I up at 4 am because there’s a four legged critter (likely a mouse) in our cabin? Yes. 😆 🐁

Running government science agencies on vibes rather than evidence kills people.

When the little one gets the whole wakeboarding thing like a champ. Perfect end to a manic Monday.

10 years ago was really the start of my advocacy journey and finding a taste of success. The article below was published in July 2015 on the #NICHD website, elevating HIE awareness to a bigger audience. Read it below: go.usa.gov/3fp3M

Abandoned truck and trailer at our neighborhood boat ramp. 😆

I don't know about you...but I'm disturbed by the amount of hell NOT being raised by leadership about masked individuals jumping out of unmarked vans, refusing to identify themselves...and just shoving people into a Goddamn vehicle and whisking them away.

Discovery of the VapoRub inventor whilst in Greensboro, NC.

Hope in AVL! ☀️🩵

Happy Father’s Day to this absolutely stellar human.

Ope it’s me.

braincanada.ca/funded_grant... #BabiesNeedScience #NECTAr #HIE #HIEAwareness #BrainHealth #NeonatalNeuroCriticalCare #NeoTwitter #NeuroTwitter

🌟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 ! 👶🧠🇨🇦

The future of our country depends on the decisions we make today. By investing in public schools and protecting Medicaid, we can ensure that every child has access to quality education and healthcare. #DontDefundPublicSchools #USDemocracy #Voices4Victory

AH! So excited to see this!!!!! Dr. Barber is THE BEST!!!! Thank you @hypothesisfund.bsky.social for elevating and expanding her critically important research! #HopeforHIE #NeoSky #NeuroSky

An article saying what most of us have been saying for a long time. And they murdered people with their COVID failures, because of this.

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

How it started. How it’s going. Happy 13th to the coolest kid I’ve ever known. And I get to spend time at #PAS2025 with some of the pioneers in cooling who are a part of why he’s here today and living his best life. #NeoSky #NeuroSky

Morning sunrise in paradise. 🌅

Thirty-eight of 43 experts cut last month from the boards that review the science and research that happens in laboratories at the National Institutes of Health are female, Black or Hispanic, according to an analysis by the chairs of a dozen of the boards.

New swag for #PAS2025 — catch @hopeforhie.org in the advocacy area Friday night! 🧠☀️🎉 #NeoSky #NeuroSky #NewbornBrains #NICU

We are at the “it feels like the eternal winter in the Lion, Witch and the Wardrobe” phase of Michigan spring. 🥶🥶🥶🥶🥶 Working under the heated blanket today.

So many exciting things going on with #HIE research -- pass along to anyone you feel might be a good fit! #NeoSky #NeuroSky #NIH #NINDS #NICHD #FDA #CDC

Well over 100 people protesting our local Tesla dealership. ✊

Ocean mammal palate cleanser.

Wow. My first ScAmway meeting to witness. 3 feet from me in Panera. This AND the destruction of our scientific instutitions?! #MyOwnPersonalHell

The collective trauma everyone is experiencing in patient advocacy, healthcare, research, education, public health, etc. is beyond palpable. This is hurting the helpers. I cannot imagine being so devoid of empathy that you are silent, cheering or complacent in this.

#HIEawarenessmonth is in its TENTH YEAR -- how??? Why??? Because there was NO awareness, advocacy, or support for HIE families before families and leader in @hopeforhie.org stepped up for a community that historically had been excluded from #NICU advocacy, QI, representation, research and more.

America, @erictopol.bsky.social "You are what you Reap". mRNA for pancreatic cancer and other abominable diseases... Now banned or under scrutiny. NIH gutted Long Covid Office shuttered Cövid isn't nearly done with us, but, much of the world is done with America 😔💔

Friday night sunlight. 🌅

it is BUCK WILD that they are just texting this shit to each other

I’ve been coming to this place since I was an infant with snowbird grandparents. I have such a love/loathe for FL. Enjoy a picture looking out past the Pink Palace into the Gulf of Mexico.

From 2010 to 2016 (latest data I have ), NIH research contributed to EVERY drug approved by the FDA