Betsy Pilon @betsypilon.bsky.social · 07/05/2026It’s a great day in the Great Lakes (and inland lakes) when the neighborhood dock and lifts go in! 🚤 🎉 000
Betsy Pilon @betsypilon.bsky.social · 04/05/2026On 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. 000
Betsy Pilon @betsypilon.bsky.social · 02/05/2026My 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.coma woman with a sash that says votes for women on itALT: a woman with a sash that says votes for women on it 010
Betsy Pilon @betsypilon.bsky.social · 27/01/2026@aapneonatal.bsky.social @ameracadpeds.bsky.social 001
Betsy Pilon @betsypilon.bsky.social · 01/12/2025Not 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. 000
Betsy Pilon @betsypilon.bsky.social · 28/11/2025SELECT ITEMS FROM HOPE FOR HIE'S CAFEPRESS STORE ARE 50% OFF TODAY! Grab some swag! www.cafepress.com/profile/Hope... @hopeforhie.org 000
Betsy Pilon @betsypilon.bsky.social · 07/11/2025I 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 #PatientAdvocacymedia.tenor.comthe word level is on a black background with a light coming out of itALT: the word level is on a black background with a light coming out of it 000
Reposted by Betsy PilonElizabeth Jacobs, PhD @elizabethjacobs.bsky.social · 31/10/2025A 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 10435156
Reposted by Betsy PilonAli Christy, MD, PhD @oligoclonalband.medsky.social · 11/10/2025HIE registries are so incredibly important for figuring out the best diagnostic and treatment modalities for these kids. @hopeforhie.org @betsypilon.bsky.social 132
Reposted by Betsy PilonHope for HIE @hopeforhie.org · 05/10/2025We 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 021
Betsy Pilon @betsypilon.bsky.social · 01/10/2025Soaking up every moment of bonus summer. The water is holding at 74/75. 010
Reposted by Betsy PilonProPublica @propublica.org · 12/09/2025Citing 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.socialpropublica.orgPrograms for Students With Hearing and Vision Loss Harmed by Trump’s Anti-Diversity PushCiting 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... 9222611274
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??? 000
Reposted by Betsy PilonHope for HIE @hopeforhie.org · 09/09/2025Excited 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 011
Betsy Pilon @betsypilon.bsky.social · 21/08/2025Am I up at 4 am because there’s a four legged critter (likely a mouse) in our cabin? Yes. 😆 🐁 010
Reposted by Betsy PilonDr. Lucky Tran @luckytran.com · 19/07/2025Running government science agencies on vibes rather than evidence kills people. 15790158
Betsy Pilon @betsypilon.bsky.social · 15/07/2025When the little one gets the whole wakeboarding thing like a champ. Perfect end to a manic Monday. 020
Betsy Pilon @betsypilon.bsky.social · 14/07/202510 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 031
Betsy Pilon @betsypilon.bsky.social · 12/07/2025Abandoned truck and trailer at our neighborhood boat ramp. 😆 110
Reposted by Betsy PilonJack Hopkins-The Original @therealjackhopkins.bsky.social · 19/06/2025I 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. 1069239956654
Betsy Pilon @betsypilon.bsky.social · 19/06/2025Discovery of the VapoRub inventor whilst in Greensboro, NC. 010
Betsy Pilon @betsypilon.bsky.social · 15/06/2025Happy Father’s Day to this absolutely stellar human. 010
Reposted by Betsy PilonPia Wintermark @piawintermark.bsky.social · 17/05/2025braincanada.ca/funded_grant... #BabiesNeedScience #NECTAr #HIE #HIEAwareness #BrainHealth #NeonatalNeuroCriticalCare #NeoTwitter #NeuroTwitterbraincanada.caThe NECTAr platform: A pan-Canadian platform dedicated to Neonatal hypoxic-ischemic Encephalopathy — For patient Care optimization, Training, and educAtionDonate today to support bold science for brain health 011
Reposted by Betsy PilonPia 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 ! 👶🧠🇨🇦 133
Reposted by Betsy PilonTommasinaResist⚜️🦋🐈⬛ @tommasinaresist.bsky.social · 16/05/2025The 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 210242
Betsy Pilon @betsypilon.bsky.social · 08/05/2025AH! 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 010
Reposted by Betsy PilonEmma Evans @trance.bsky.social · 05/05/2025An 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.comMaga’s era of ‘soft eugenics’: let the weak get sick, help the clever breedAt 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 611347
Reposted by Betsy PilonHope for HIE @hopeforhie.org · 02/05/2025MAY 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 021
Betsy Pilon @betsypilon.bsky.social · 24/04/2025How 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 0160
Reposted by Betsy PilonThe Washington Post @washingtonpost.com · 16/04/2025Thirty-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.comWomen, minorities fired in purge of NIH science review boardsScientists, 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. 641101915224
Betsy Pilon @betsypilon.bsky.social · 16/04/2025New swag for #PAS2025 — catch @hopeforhie.org in the advocacy area Friday night! 🧠☀️🎉 #NeoSky #NeuroSky #NewbornBrains #NICU 020
Betsy Pilon @betsypilon.bsky.social · 10/04/2025We 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. 010
Betsy Pilon @betsypilon.bsky.social · 08/04/2025So 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 000
Betsy Pilon @betsypilon.bsky.social · 03/04/2025Well over 100 people protesting our local Tesla dealership. ✊ 010
Betsy Pilon @betsypilon.bsky.social · 02/04/2025Wow. My first ScAmway meeting to witness. 3 feet from me in Panera. This AND the destruction of our scientific instutitions?! #MyOwnPersonalHell 010
Betsy Pilon @betsypilon.bsky.social · 02/04/2025The 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. 020
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. 000
Reposted by Betsy PilonDr David Joffe MB BS(Hons), PhD, FRACP @davidjoffe64.bsky.social · 29/03/2025America, @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 😔💔 35215