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Reposted by Dan Lavery

Dan Lavery @djlavery.bsky.social · May 1

Congratulations to the 2025 CDKL5 Program of Excellence Pilot Grant awardees! The Loulou Foundation is excited to provide these awards, in collaboration with the Orphan Disease Center at the University of Pennsylvania Perelman School of Medicine, to support CDKL5 research. #CDKL5

CDKL5 pilot grant awardees for 2025, to support basic and therapeutics research on CDKL5 and CDKL5 Deficiency Disorder. Provided by the Loulou Foundation in collaboration with the Orphan Disease Center at the University of Pennsylvania Perelman School of Medicine.

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Dan Lavery @djlavery.bsky.social · May 1

Congratulations to the 2025 CDKL5 Program of Excellence Pilot Grant awardees! The Loulou Foundation is excited to provide these awards, in collaboration with the Orphan Disease Center at the University of Pennsylvania Perelman School of Medicine, to support CDKL5 research. #CDKL5

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Reposted by Dan Lavery

Jon Brudvig @jonbrudvig.bsky.social · Apr 9

Francis Crick called it “impossible” in 1979. Now it’s real.
A 1 mm cube of mouse brain, 200k cells, 500M synapses, all mapped alongside neuronal activity.

This new MICrONS dataset maps brain structure and function in a way that we've never seen🧪
🔗 www.microns-explorer.org
📄 doi.org/10.1038/s415...

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Jon Brudvig @jonbrudvig.bsky.social · Apr 10

Cells are swapping their mitochondria. What does this mean for our health?

Researchers are studying why the energy factories are moving between cells and whether the process can be harnessed to treat cancer and other diseases. 🧪🦠💊

www.nature.com/articles/d41...

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Dan Lavery @djlavery.bsky.social · Feb 23

100%. Everyone in the US please call your representatives to let them know how devastating these cuts and firings are to rare disease families who already have so many challenges.

Stephanie L. Shepherd @stephlshep.bsky.social · Feb 22

Please read, then call your legislators to demand they protect the most vulnerable in our society. Our daughter with complex medical needs (CDKL5) relies on the protections and supports provided by IDEA and Medicaid to preserve her quality of life. open.substack.com/pub/erinraff...

Our Medicaid Story

Cuts to Medicaid will devastate poor and disabled people in America. Please call your representative THIS WEEK and tell them you oppose these cuts!

open.substack.com

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Reposted by Dan Lavery

Mustafa Sahin @sahinm.bsky.social · Feb 15

Excited to share a new paper from our lab out this week in Molecular Psychiatry on an mTORopathy, PTEN Hamartoma Tumor Syndrome.

www.nature.com/articles/s41...

Phenotypic rescue via mTOR inhibition in neuron-specific Pten knockout mice reveals AKT and mTORC1-site specific changes - Molecular Psychiatry

Molecular Psychiatry - Phenotypic rescue via mTOR inhibition in neuron-specific Pten knockout mice reveals AKT and mTORC1-site specific changes

www.nature.com

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Dan Lavery @djlavery.bsky.social · Feb 6

Great funding opportunity for a rare DEE/NDD, #CDKL5 Deficiency Disorder. Send in your LOI today!

odc-upenn.bsky.social @odc-upenn.bsky.social · Feb 6

The ODC and Loulou Foundation are pleased to announce the 2025 CDKL5 Program of Excellence Pilot Grant Program. This funding opportunity is open to the international community! Apply today! bit.ly/CDKL5grant2025 #cdkl5 #grant #funding #cdd

2025 CDKL5 Pilot Grant Program LOI — Orphan Disease Center

The ODC and Loulou Foundation CDKL5 Pilot Grant Program provides a one‐year grant for $150,000.00 (total cost) to support research related to CDKL5 Deficiency Disorder (CDD). The number of awards is...

bit.ly

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Epilepsia Journal @epilepsiajournal.bsky.social · Jan 24

Key point: Cenobamate is a promising and safe treatment for SCN8A-related DEEs, even during early childhood.
doi.org/10.1111/epi....

#epilepsy #ILAE #drugresistantepilepsy #geneticepilepsy #sodiumchannelopathy #DEE

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Thomas CM Lavery @thomascmlavery.bsky.social · Jan 24

Maybe if the NSF just stands really, really still, Trump will forget it exists

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Lindsay Wiley @lindsaywiley.bsky.social · Jan 23

Shutting down medical research — not just within NIH, but everywhere that’s funded by NIH — will have long-term effects on medicine & short-term effects on state, higher education & hospital budgets. This affects all of us, not just researchers.

Don Moynihan @donmoyn.bsky.social · Jan 23

The assault on NIH is a test for how the national media covers the Trump admin: Trump is shutting down medical research!

That is easy to communicate. Will they treat it as a 5 alarm fire in a way that forces the government to respond, or will they downplay & caveat it?

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Audrey Vernick @audreyvernick.bsky.social · Jan 23

This administration's policy is effectively freezing healthcare and scientific research. Worried? I am.

www.science.org/content/arti...

Trump hits NIH with ‘devastating’ freezes on meetings, travel, communications, and hiring

Researchers facing

www.science.org

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Paul Krugman @pkrugman.bsky.social · Dec 21

New evidence that it was the economic vibes, stupid open.substack.com/pub/paulkrug...

A Win for the Vibecession Story

open.substack.com

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Ana Mingorance @cnsdrughunter.bsky.social · Dec 3

Looking forward to getting into LAX early to catch up with the traditional #SYNGAP1 Conference by @curesyngap1.bsky.social and the #Dravet Roundtable by @curedravet.bsky.social both on December 5th just before #AES2024

Who else is coming? 💚

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Xilma Ortiz-Gonzalez MD PhD @drxilma.bsky.social · Nov 25

Please share-we are hosting an in person (travel support available!) for trainees who want to consider CHOP/Penn labs for postdoc. Apply to have a chance to check out our top notch science and get a trip to Philly!

Struan Grant @struangrant.bsky.social · Nov 25

Late-stage graduate students and junior postdoctoral fellows are invited to attend the 2025 Recruitment Summit for CHOP/Penn Postdoctoral Scholars in Cell Biology and Genomics

careers.chop.edu/us/en/event/...

Recruitment Summit for Postdoctoral Scholars in Cell Biology and Genomics | Children’s Hospital of Philadelphia

Recruitment Summit for Postdoctoral Scholars in Cell Biology and Genomics in Philadelphia, Pennsylvania, United States. null at Children’s Hospital of Philadelphia

careers.chop.edu

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Oscar Woolnough @owoolnough.bsky.social · Nov 27

As I've been seeing a lot of job postings here, I've set up a NeuroJobs feed. Add #NeuroJobs to your post if you're recruiting or looking for a PhD, Postdoc, or faculty position in Neuro or an adjacent field.

bsky.app/profile/did:...

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Mick Craig @mickcraig.bsky.social · Nov 27

PhD Alert! We have a fully funded (UK residents only, I'm afraid 😟) #NeuroSkyence PhD to move towards developing an at-home EEG system to monitor sleep oscillations for brain health monitoring and early dementia diagnosis. Please share with your network!

www.gla.ac.uk/colleges/mvl...

University of Glasgow - Colleges - College of Medical, Veterinary & Life Sciences - MVLS Graduate School - PhD Research Opportunities - College Futures PhD Programme - Projects - Advanced Diagnostics ...

www.gla.ac.uk

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Zoltan Molnar @zoltan-molnar.bsky.social · Nov 17

Please keep the date for HUMAN CEREBRAL CORTEX DEVELOPMENT III - Anatomical Society Meeting 14-16th July 2025, St John’s College, Oxford
Follow up to two meetings in 2010 and in 2018 issues of the Journal of Anatomy onlinelibrary.wiley.com/doi/10.1111/... and onlinelibrary.wiley.com/toc/14697580...

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Dan Lavery @djlavery.bsky.social · Nov 24

So cool.

Gord Fishell @gordfishell.bsky.social · Nov 24

Excited to publish a broad set of enhancers to target interneuron types in the brain, along with a broad set of collaborators. Part of the BI armamentarium. Together this will help revolutionize the targeting of brain circuits.https://www.biorxiv.org/content/10.1101/2024.07.17.603924v2

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Rikke S. Møller @rikkesmoller.bsky.social · Nov 20

Quantitative EEG biomarkers for STXBP1-related disorders 🧬

Relative Delta Power is even higher in #STXBP1-DEE than in other developmental & epileptic encephalopathies - highest in the frontal areas 🧠

For more info 👉
onlinelibrary.wiley.com/doi/10.1111/...

#Epilepsy #Genetics

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Ana Mingorance @cnsdrughunter.bsky.social · Nov 20

🧬 If you work on a neurological #RareDisease you should be following the news around Neurogene's gene therapy for #Rett syndrome.

They have very positive results in the clinic and also a really bad safety problem at a higher dose. Good chat with CEO in link: ir.neurogene.com/events/event...

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Dan Lavery @djlavery.bsky.social · Nov 12

Bruce Springsteen on Broadway, July 2021