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Betsy Pilon

@betsypilon.bsky.social

660 followers 760 following 270 posts

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

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Betsy Pilon @betsypilon.bsky.social · Jan 26

Please note the #advocacy spice level index has been raised to a critical
🌶️🌶️🌶️🌶️/🌶️🌶️🌶️🌶️🌶️ level.

Reposted by Betsy Pilon

Elizabeth Jacobs, PhD @elizabethjacobs.bsky.social · 5d

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.

journals.lww.com

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Betsy Pilon @betsypilon.bsky.social · 23d

First ever @hopeforhie.org leadership summit ✅

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Reposted by Betsy Pilon

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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Betsy Pilon @betsypilon.bsky.social · 26d

With some of my favorite 🧠 peeps. #CNSAM

Reposted by Betsy Pilon

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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Betsy Pilon @betsypilon.bsky.social · Oct 1

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

Reposted by Betsy Pilon

ProPublica @propublica.org · Sep 12

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

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. “How low can you go?” one advoc...

www.propublica.org

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Betsy Pilon @betsypilon.bsky.social · Sep 11

"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???

Reposted by Betsy Pilon

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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Betsy Pilon @betsypilon.bsky.social · Aug 21

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

Reposted by Betsy Pilon

Dr. Lucky Tran @luckytran.com · Jul 19

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

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Betsy Pilon @betsypilon.bsky.social · Jul 15

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

Betsy Pilon @betsypilon.bsky.social · Jul 14

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

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Betsy Pilon @betsypilon.bsky.social · Jul 12

Abandoned truck and trailer at our neighborhood boat ramp. 😆

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Betsy Pilon @betsypilon.bsky.social · Jun 25

Eternally grateful to not understand these people.

Reposted by Betsy Pilon

Jack Hopkins-The Original @therealjackhopkins.bsky.social · Jun 18

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.