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
Get out there and vote, Michigan! 🗳️
August 4, 2026 at 12:32 PM
Get out there and vote, Michigan! 🗳️
It’s a great day in the Great Lakes (and inland lakes) when the neighborhood dock and lifts go in! 🚤 🎉
May 7, 2026 at 5:51 PM
It’s a great day in the Great Lakes (and inland lakes) when the neighborhood dock and lifts go in! 🚤 🎉
On my way to the ONE Conference…and do you ever look at something so beautiful you just can’t believe you are so lucky to witness it?
Today that was the Rockies from 30k feet.
Today that was the Rockies from 30k feet.
May 4, 2026 at 2:52 AM
On my way to the ONE Conference…and do you ever look at something so beautiful you just can’t believe you are so lucky to witness it?
Today that was the Rockies from 30k feet.
Today that was the Rockies from 30k feet.
My kids are alright. Older one on his 8th grade DC trip commenting about how important protest rights are. Little 10 year old picked woman’s suffrage for a nonfiction topic and asked for matching suffragette sashes for her co-presenters.
a woman with a sash that says votes for women on it
ALT: a woman with a sash that says votes for women on it
media.tenor.com
May 2, 2026 at 3:22 AM
My kids are alright. Older one on his 8th grade DC trip commenting about how important protest rights are. Little 10 year old picked woman’s suffrage for a nonfiction topic and asked for matching suffragette sashes for her co-presenters.
The much-anticipated
@AmerAcadPeds
COFN guidelines for #TherapeuticHypothermia published yesterday.
Here is #HopeforHIE's position statement:
Tinyurl.com/AAPcoolingstatement
@AmerAcadPeds
COFN guidelines for #TherapeuticHypothermia published yesterday.
Here is #HopeforHIE's position statement:
Tinyurl.com/AAPcoolingstatement
January 27, 2026 at 5:44 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.
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.