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Betsy Pilon

@betsypilon.bsky.social
688 followers 761 following 285 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 · 04/08/2026
Get out there and vote, Michigan! 🗳️
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Betsy Pilon @betsypilon.bsky.social · 11/07/2026
#PureMichigan
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Betsy Pilon @betsypilon.bsky.social · 07/05/2026
It’s a great day in the Great Lakes (and inland lakes) when the neighborhood dock and lifts go in! 🚤 🎉
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Betsy Pilon @betsypilon.bsky.social · 04/05/2026
The #BenRector seat. IYKYK.
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Betsy Pilon @betsypilon.bsky.social · 04/05/2026
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.
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Betsy Pilon @betsypilon.bsky.social · 02/05/2026
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.
media.tenor.com
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
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Betsy Pilon @betsypilon.bsky.social · 08/03/2026
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Betsy Pilon @betsypilon.bsky.social · 01/03/2026
Hand to heart.
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Betsy Pilon @betsypilon.bsky.social · 27/01/2026
@aapneonatal.bsky.social @ameracadpeds.bsky.social
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Betsy Pilon @betsypilon.bsky.social · 01/12/2025
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.
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Betsy Pilon @betsypilon.bsky.social · 28/11/2025
SELECT ITEMS FROM HOPE FOR HIE'S CAFEPRESS STORE ARE 50% OFF TODAY! Grab some swag! www.cafepress.com/profile/Hope... @hopeforhie.org
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Betsy Pilon @betsypilon.bsky.social · 15/11/2025
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Betsy Pilon @betsypilon.bsky.social · 07/11/2025
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
media.tenor.com
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
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Elizabeth Jacobs, PhD @elizabethjacobs.bsky.social · 31/10/2025
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 · 12/10/2025
First ever @hopeforhie.org leadership summit ✅
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Ali Christy, MD, PhD @oligoclonalband.medsky.social · 11/10/2025
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 · 10/10/2025
With some of my favorite 🧠 peeps. #CNSAM
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Hope for HIE @hopeforhie.org · 05/10/2025
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 · 01/10/2025
Soaking up every moment of bonus summer. The water is holding at 74/75.
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ProPublica @propublica.org · 12/09/2025
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
propublica.org
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...
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Betsy Pilon @betsypilon.bsky.social · 11/09/2025
"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???
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Hope for HIE @hopeforhie.org · 09/09/2025
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 · 21/08/2025
Am I up at 4 am because there’s a four legged critter (likely a mouse) in our cabin? Yes. 😆 🐁
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Dr. Lucky Tran @luckytran.com · 19/07/2025
Running government science agencies on vibes rather than evidence kills people.
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Betsy Pilon @betsypilon.bsky.social · 15/07/2025
When the little one gets the whole wakeboarding thing like a champ. Perfect end to a manic Monday.
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Betsy Pilon @betsypilon.bsky.social · 14/07/2025
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 · 12/07/2025
Abandoned truck and trailer at our neighborhood boat ramp. 😆
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Jack Hopkins-The Original @therealjackhopkins.bsky.social · 19/06/2025
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.
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Betsy Pilon @betsypilon.bsky.social · 19/06/2025
Discovery of the VapoRub inventor whilst in Greensboro, NC.
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Betsy Pilon @betsypilon.bsky.social · 16/06/2025
Hope in AVL! ☀️🩵
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Betsy Pilon @betsypilon.bsky.social · 15/06/2025
Happy Father’s Day to this absolutely stellar human.
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Betsy Pilon @betsypilon.bsky.social · 12/06/2025
Ope it’s me.
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Pia Wintermark @piawintermark.bsky.social · 17/05/2025
braincanada.ca/funded_grant... #BabiesNeedScience #NECTAr #HIE #HIEAwareness #BrainHealth #NeonatalNeuroCriticalCare #NeoTwitter #NeuroTwitter
braincanada.ca
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
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Pia Wintermark @piawintermark.bsky.social · 17/05/2025
🌟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 ! 👶🧠🇨🇦
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TommasinaResist⚜️🦋🐈‍⬛ @tommasinaresist.bsky.social · 16/05/2025
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
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Betsy Pilon @betsypilon.bsky.social · 08/05/2025
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
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Emma Evans @trance.bsky.social · 05/05/2025
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.
theguardian.com
Maga’s era of ‘soft eugenics’: let the weak get sick, help the clever breed
At the heart of all Trump administration policies is ‘soft eugenics’ thinking – the idea that if you take away life-saving services, then only the strong will survive
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Hope for HIE @hopeforhie.org · 02/05/2025
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
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Betsy Pilon @betsypilon.bsky.social · 24/04/2025
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
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Betsy Pilon @betsypilon.bsky.social · 20/04/2025
Morning sunrise in paradise. 🌅
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The Washington Post @washingtonpost.com · 16/04/2025
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.
washingtonpost.com
Women, minorities fired in purge of NIH science review boards
Scientists, with expertise in fields that include mental health, cancer and infectious disease, typically serve five-year terms and were not given a reason for their dismissal.
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Betsy Pilon @betsypilon.bsky.social · 16/04/2025
New swag for #PAS2025 — catch @hopeforhie.org in the advocacy area Friday night! 🧠☀️🎉 #NeoSky #NeuroSky #NewbornBrains #NICU
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Betsy Pilon @betsypilon.bsky.social · 10/04/2025
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.
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Betsy Pilon @betsypilon.bsky.social · 08/04/2025
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
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Betsy Pilon @betsypilon.bsky.social · 03/04/2025
Well over 100 people protesting our local Tesla dealership. ✊
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Betsy Pilon @betsypilon.bsky.social · 03/04/2025
Ocean mammal palate cleanser.
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Betsy Pilon @betsypilon.bsky.social · 02/04/2025
Wow. My first ScAmway meeting to witness. 3 feet from me in Panera. This AND the destruction of our scientific instutitions?! #MyOwnPersonalHell
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Betsy Pilon @betsypilon.bsky.social · 02/04/2025
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.
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Betsy Pilon @betsypilon.bsky.social · 02/04/2025
#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.
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Dr David Joffe MB BS(Hons), PhD, FRACP @davidjoffe64.bsky.social · 29/03/2025
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 😔💔
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