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Betsy Pilon

@betsypilon.bsky.social

Working to improve outcomes for neonatal & pediatric-acquired hypoxic brain injury. Powered by hope and coffee. Current advocacy spice level: 🌢️🌢️🌢️🌢️/🌢️🌢️🌢️🌢️🌢️ #HopeforHIE #NeoSky #NeuroSky #PatientAdvocacy

675 Followers  |  758 Following  |  276 Posts  |  Joined: 10.11.2024  |  1.5141

Latest posts by betsypilon.bsky.social on Bluesky

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

27.01.2026 17:44 β€” πŸ‘ 0    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

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.

01.12.2025 15:17 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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SELECT ITEMS FROM HOPE FOR HIE'S CAFEPRESS STORE ARE 50% OFF TODAY! Grab some swag!
www.cafepress.com/profile/Hope...

@hopeforhie.org

28.11.2025 19:10 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Post image 15.11.2025 21:11 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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the word level is on a black background with a light coming out of it ALT: the word level is on a black background with a light coming out of it

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

07.11.2025 20:30 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

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.

31.10.2025 14:35 β€” πŸ‘ 435    πŸ” 157    πŸ’¬ 10    πŸ“Œ 9
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First ever @hopeforhie.org leadership summit βœ…

12.10.2025 16:53 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 1
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HIE registries are so incredibly important for figuring out the best diagnostic and treatment modalities for these kids. @hopeforhie.org @betsypilon.bsky.social

11.10.2025 21:17 β€” πŸ‘ 3    πŸ” 2    πŸ’¬ 1    πŸ“Œ 0
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With some of my favorite 🧠 peeps. #CNSAM

10.10.2025 11:44 β€” πŸ‘ 4    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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 πŸ˜‰).

Listen over on our YouTube channel:
www.youtube.com/playlist?lis...

#NeoSky #NeuroSky #NICU #HopeforHIE #HIE #PICU #PatientAdvocacy

05.10.2025 15:33 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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Soaking up every moment of bonus summer. The water is holding at 74/75.

01.10.2025 11:31 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Programs for Students With Hearing and Vision Loss Harmed by Trump’s Anti-Diversity Push Citing concerns about DEI, the U.S. Department of Education has halted funding for programs that support students with combined hearing and vision loss in eight states. β€œHow low can you go?” one advoc...

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.

β€œHow low can you go?” one advocate asked. β€œHow can you do this to children?”

By @jodiscohen.bsky.social @jsmithrichards.bsky.social

12.09.2025 00:15 β€” πŸ‘ 2281    πŸ” 1283    πŸ’¬ 94    πŸ“Œ 154

"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???

11.09.2025 15:52 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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

09.09.2025 16:05 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

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

21.08.2025 08:20 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

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

19.07.2025 16:56 β€” πŸ‘ 797    πŸ” 162    πŸ’¬ 15    πŸ“Œ 6
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When the little one gets the whole wakeboarding thing like a champ. Perfect end to a manic Monday.

15.07.2025 03:10 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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

14.07.2025 20:10 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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Abandoned truck and trailer at our neighborhood boat ramp. πŸ˜†

12.07.2025 12:51 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

Eternally grateful to not understand these people.

25.06.2025 19:07 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

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.

18.06.2025 23:21 β€” πŸ‘ 24154    πŸ” 6693    πŸ’¬ 1077    πŸ“Œ 397
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Discovery of the VapoRub inventor whilst in Greensboro, NC.

19.06.2025 01:24 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

I β€œfucking voted for them” this time and last time and next time. Touch grass.

19.06.2025 01:21 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

Then why aren’t Democrats doing the human things?

16.06.2025 21:52 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

Yeah. I love my dog. But my disabled child needing Medicaid services is in a completely different realm of priority. Eva. People are dying.

16.06.2025 21:51 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

I love dogs and think it’s a great idea. But this seems like it should be at the bottom of priorities right now.

16.06.2025 21:50 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Hope in AVL! β˜€οΈπŸ©΅

16.06.2025 19:10 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Happy Father’s Day to this absolutely stellar human.

15.06.2025 17:34 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Ope it’s me.

12.06.2025 19:33 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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The NECTAr platform: A pan-Canadian platform dedicated to Neonatal hypoxic-ischemic Encephalopathy β€” For patient Care optimization, Training, and educAtion Donate today to support bold science for brain health

braincanada.ca/funded_grant...

#BabiesNeedScience #NECTAr #HIE #HIEAwareness #BrainHealth #NeonatalNeuroCriticalCare #NeoTwitter #NeuroTwitter

17.05.2025 01:01 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

@betsypilon is following 19 prominent accounts