CURE Epilepsy
cureepilepsy.bsky.social
CURE Epilepsy
@cureepilepsy.bsky.social
50 followers 85 following 33 posts
CURE Epilepsy is the leading nongovernmental funder of epilepsy research, with over 300 grants funded in 19 countries to date.
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📢 News on the National Plan for Epilepsy! The draft document outlining the goals is here for your feedback. Review the draft plan and provide feedback via online form by Friday, 11/31/2025: https://www.epilepsy-national-plan.org/submit-feedback/meeting/register/tZcrc-qgpzIpGNBbqqO0X0ocIzhzl99Sgv2H
Submit Feedback | Epilepsy National Plan
www.epilepsy-national-plan.org
Windy City, you blew us away! 👟🏅 Over 30 runners ran right past our goal, raising a fantastic $90,000 for epilepsy research! 💪 Thank you! And a big thanks to @sklifescience.bsky.social for powering Team CURE Epilepsy this year and to Method Printing for providing the shirts.
Mark your calendar! On 9/30, meet Dr. Rachel June Smith and the budding scientists working in her lab for UNITE to CURE Epilepsy. Get the ball rolling by making a gift today: https://bit.ly/46nhYFf
Thank you so much for supporting Night of Discovery and making it an evening we'll never forget!
It was a privilege to sponsor the 2025 Night of Discovery Gala by @cureepilepsy.bsky.social this weekend in Chicago.

The event brought together families, researchers, and advocates, all working toward one goal: curing #epilepsy.

www.cureepilepsy.org/annual-benef...
🧬 The NIH awards $8.6M to renew the Rare Diseases Clinical Research Network for neurodevelopmental studies, led by OHSU. The project will study more than 15 different rare genetic brain disorders to improve diagnosis and care. #RareDisease #NIH #Neurogenetics

🔗 Read more: https://bit.ly/4nGMJur
NIH Awards $8.6 Million Grant to Renew Rare Disease Clinical Research
In a groundbreaking advancement for the field of neurodevelopmental genetics, Mustafa Sahin, MD, PhD, Neurologist-in-Chief and Chair of the Department of Neurology at Boston Children’s Hospital, a
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This Epilepsy Explained answers questions about PTE, like:
🧠 Treatments and how effective they are
🧠 If a person suffers head trauma, are they at risk for the rest of their lives?
🧠 Are some meds better at treating depression in people with PTE?
Watch: https://bit.ly/3I0O6VS
📢 Cautious optimism for #NIH: A House subcommittee advanced a FY26 bill with $46.9B for NIH, slightly above current levels and far better than the 40% cut proposed earlier. The full #House and #Senate must still agree, and a CR may be needed to avoid a shutdown on Sept. 30. #epilepsyresearch
Infections at birth like neonatal sepsis or meningitis may up the odds of childhood epilepsy. Stronger effects seen in focal vs generalized epilepsy. Early prevention & treatment of newborn infections could help reduce this risk. 🔍

🔗 More details: https://bit.ly/3Vi5RTu
Early-Onset Neonatal Infection and Epilepsy in Children
Exploration of the association between early-onset neonatal infection, specifically sepsis and meningitis, and childhood epilepsy.
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You made a big impact!
💜 $5.2M+ in research
🔬 30 active grants
📚 2 staff publications
🏃 28 Champion events nationwide

Together, we're driving change in epilepsy research. THANK YOU for standing with us! 🙌 More: https://www.cureepilepsy.org/our-research/impact-reports/researching-for-a-cure-2025/
UCLA researchers used stem cell‑derived assembloids to show how SCN8A variants trigger cortical hyperactivity (seizures) and impair hippocampal rhythms (memory). This new model may explain cognitive challenges beyond seizures and open avenues for better treatments.

Read more: https://bit.ly/41O86BE
UCLA researchers find how epilepsy genes disrupt different brain regions using stem cell models
The new research points to the distinct effects that a single disease-causing gene variation can have across different regions of the brain.
newsroom.ucla.edu
This weekend at #IEC2025, our CSO Dr. Laura Lubbers joined Dr. Dan Lowenstein for the Presidential Symposium on inclusive, patient-centered epilepsy care. She also shared updates on SUDEP Common Data Elements led by CURE Epilepsy. #ILAE #SUDEP #epilepsyresearch
Reposted by CURE Epilepsy
September is Newborn Screening Awareness Month, and we have a full calendar of opportunities for you to learn and engage!

👉 To register and find more details visit our events calendar here: everylifefoundation.org/events-sched...

#newbornscreening #awarenessmonth #nbs #policy #raredisease
In this Epilepsy Explained video, Dr. Perry breaks down what #MEG is, how it works, and why it matters for people living with #epilepsy. He answers some of the most frequently asked questions about its #clinical use and potential benefits.

🔗 Learn more: https://bit.ly/3GvMWRr
MEG Explained Rescue Medications Explained
Dr. M Scott Perry, Head of Neurosciences at the Jane and John Justin Institute for Mind Health at Cook Children’s Hospital, answers your questions about MEG, or magnetoencephalography.
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Do you or a loved one experience epileptic seizures lasting over than 3 minutes? The STARS Study is a global clinical study testing an investigational inhaler that may help stop a prolonged seizure after it starts.

Learn more about the STARS Study from UCB here: https://www.starsepilepsystudy.com/
Thank you so much to our Night of Discovery Platinum and Diamond Sponsors! We are so grateful for their generosity and commitment to finding cures for epilepsy. There's still time to join us as a sponsor of this year's Night of Discovery! Learn more here: https://Discovery2025.givesmart.com
Reposted by CURE Epilepsy
The BIPARTISAN National Plan for Epilepsy is incredibly important. Please learn about it and support it, including contacting your representatives and senators.
Curious about the National Plan for #Epilepsy and what it means for the community? Dr. Daniel Lowenstein breaks it all down—who's behind it, why it’s urgent, and how YOU can help drive change.
Standardized preclinical Common Data Elements and Case Report Forms may transform SUDEP research. Aligning how variables are recorded improves reproducibility, cross-study comparisons, and discovery of biomarkers and targeted interventions. Read more: https://bit.ly/4mPzIhF
Enhancing Sudden Unexpected Death in Epilepsy (SUDEP) research through development of pre-clinical common data elements
The develop of SUDEP Common Data Elements (CDEs) and Case Report Forms to enable standardization and translation of preclinical SUDEP data.
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Curious about the National Plan for #Epilepsy and what it means for the community? Dr. Daniel Lowenstein breaks it all down—who's behind it, why it’s urgent, and how YOU can help drive change.