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
Current advocacy spice level:
🌶️🌶️🌶️🌶️/🌶️🌶️🌶️🌶️🌶️
#HopeforHIE #NeoSky #NeuroSky #PatientAdvocacy
Pinned
Betsy Pilon
@betsypilon.bsky.social
· Jan 26
Please note the #advocacy spice level index has been raised to a critical
🌶️🌶️🌶️🌶️/🌶️🌶️🌶️🌶️🌶️ level.
🌶️🌶️🌶️🌶️/🌶️🌶️🌶️🌶️🌶️ level.
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.
@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.
December 1, 2025 at 3:17 PM
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.
@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
www.cafepress.com/profile/Hope...
@hopeforhie.org
November 28, 2025 at 7:10 PM
SELECT ITEMS FROM HOPE FOR HIE'S CAFEPRESS STORE ARE 50% OFF TODAY! Grab some swag!
www.cafepress.com/profile/Hope...
@hopeforhie.org
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
🐁🧠
#NeoSky #NeuroSky #NICU #HopeforHIE #HIE #BasicScience #PatientAdvocacy
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
media.tenor.com
November 7, 2025 at 8:30 PM
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
🐁🧠
#NeoSky #NeuroSky #NICU #HopeforHIE #HIE #BasicScience #PatientAdvocacy
Reposted by Betsy Pilon
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.
This supports literature suggesting that infections during pregnancy can increase the odds of ASD in offspring.
It also supports vaccination.
journals.lww.com
October 31, 2025 at 2:35 PM
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.
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 ✅
October 12, 2025 at 4:53 PM
First ever @hopeforhie.org leadership summit ✅
Reposted by Betsy Pilon
HIE registries are so incredibly important for figuring out the best diagnostic and treatment modalities for these kids. @hopeforhie.org @betsypilon.bsky.social
October 11, 2025 at 9:17 PM
HIE registries are so incredibly important for figuring out the best diagnostic and treatment modalities for these kids. @hopeforhie.org @betsypilon.bsky.social
Reposted by Betsy Pilon
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
Listen over on our YouTube channel:
www.youtube.com/playlist?lis...
#NeoSky #NeuroSky #NICU #HopeforHIE #HIE #PICU #PatientAdvocacy
October 5, 2025 at 3:33 PM
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
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.
October 1, 2025 at 11:31 AM
Soaking up every moment of bonus summer. The water is holding at 74/75.
Reposted by Betsy Pilon
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
“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
September 12, 2025 at 12:15 AM
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
“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???
September 11, 2025 at 3:52 PM
"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
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
Read more: www.neurenpharma.com/pdf/cbb30d08...
#HopeforHIE #Neonatology #ChildNeurology #NeoSky #NeuroSky
September 9, 2025 at 4:05 PM
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
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. 😆 🐁
August 21, 2025 at 8:20 AM
Am I up at 4 am because there’s a four legged critter (likely a mouse) in our cabin? Yes. 😆 🐁
Reposted by Betsy Pilon
Running government science agencies on vibes rather than evidence kills people.
July 19, 2025 at 4:56 PM
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.
July 15, 2025 at 3:10 AM
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
Read it below:
go.usa.gov/3fp3M
July 14, 2025 at 8:10 PM
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
Read it below:
go.usa.gov/3fp3M
Abandoned truck and trailer at our neighborhood boat ramp. 😆
July 12, 2025 at 12:51 PM
Abandoned truck and trailer at our neighborhood boat ramp. 😆
Reposted by Betsy Pilon
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.
June 18, 2025 at 11:21 PM
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.
June 19, 2025 at 1:25 AM
Discovery of the VapoRub inventor whilst in Greensboro, NC.
Happy Father’s Day to this absolutely stellar human.
June 15, 2025 at 5:35 PM
Happy Father’s Day to this absolutely stellar human.
Reposted by Betsy Pilon
braincanada.ca/funded_grant...
#BabiesNeedScience #NECTAr #HIE #HIEAwareness #BrainHealth #NeonatalNeuroCriticalCare #NeoTwitter #NeuroTwitter
#BabiesNeedScience #NECTAr #HIE #HIEAwareness #BrainHealth #NeonatalNeuroCriticalCare #NeoTwitter #NeuroTwitter
The NECTAr platform: A pan-Canadian platform dedicated to Neonatal hypoxic-ischemic Encephalopathy — For patient Care optimization, Training, and educAtion
Donate today to support bold science for brain health
braincanada.ca
May 17, 2025 at 1:01 AM
Reposted by Betsy Pilon
🌟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 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
! 👶🧠🇨🇦
May 17, 2025 at 1:01 AM
🌟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 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
! 👶🧠🇨🇦