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CURE Epilepsy @cureepilepsy.bsky.social · 2h

📢 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

CURE Epilepsy @cureepilepsy.bsky.social · 22h

📣 This month on Epilepsy Explained, Dr. Kelly Knupp explains Juvenile Myoclonic Epilepsy (JME), one of the most common epilepsy syndromes in teens and young adults. 📽️ Tune in now and learn more about JME: https://bit.ly/4hfY1Uw

Juvenile Myoclonic Epilepsy Explained

Dr. Kelly Knupp, MD, answers your questions about Juvenile Myoclonic Epilepsy, or JME. Dr. Knupp, Pediatric Epileptologist at Children's Hospital of Colorado, explains what Juvenile Myoclonic Epilepsy is, how seizures present in JME, who is most often i...

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CURE Epilepsy @cureepilepsy.bsky.social · 22h

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.

Two members of the Maffie family stand in red CURE Epilepsy clothes with a sign that says, "Expect Nothing. Appreciate Everything." One woman is holding up the latest CURE Epilepsy impact report, which featured a photo of their family.

Runner wearing a "Cure Epilepsy" shirt participating in a marathon, waving at the camera among other participants on a sunny day.

Participant in a Cure Epilepsy shirt high-fiving spectators at a marathon event.

Participants and spectators at a marathon, with one runner with her arms out as if to say, "Ta Da!" Spectators holding supportive signs, on a sunny day.

CURE Epilepsy @cureepilepsy.bsky.social · 25d

Becca Seigel lives with daily seizures, but her resilience shines through. ❤️ Her family’s love fuels hope and action. Now they’re helping CURE Epilepsy fund research for a cure.
📖 Read more: https://bit.ly/4nIXhtf

#EpilepsyAwareness #EpilepsyResearch #MedicalResearch

Fueled by Love, Driven by Purpose

For nearly 30 years, Lisa and Randy Siegel have built a beautiful life for their children filled with love, success, and connection. Their daughter, Becca, is...

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CURE Epilepsy @cureepilepsy.bsky.social · 27d

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

Four smiling individuals working at computers in a modern office, promoting the 'Unite to Cure Epilepsy' event on September 30, with a note about a 2X match active now.

CURE Epilepsy @cureepilepsy.bsky.social · 27d

Thank you so much for supporting Night of Discovery and making it an evening we'll never forget!

SK Life Science, Inc. @sklifescience.bsky.social · 27d

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...

CURE Epilepsy @cureepilepsy.bsky.social · 28d

🧬 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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CURE Epilepsy @cureepilepsy.bsky.social · Sep 19

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

CURE Epilepsy @cureepilepsy.bsky.social · Sep 18

📢 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

Graphic featuring the United States Capitol with text 'Advocating for Epilepsy Research - NIH Funding Update'.

CURE Epilepsy @cureepilepsy.bsky.social · Sep 17

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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CURE Epilepsy @cureepilepsy.bsky.social · Sep 16

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/

Collage promoting "Researching for a Cure 2024-2025". Top left: Person sitting for an interview outdoors. Top right: Person conducting a laboratory experiment. Middle left: Person analyzing samples under a microscope. Middle right: Large text "RESEARCHING FOR A CURE 2024-2025" with stars. Bottom left: Neural network graphic. Bottom right: Person running in a marathon with spectators watching. Text includes statistics such as "$5.2M in program investments" and "30 grants under management".

CURE Epilepsy @cureepilepsy.bsky.social · Sep 11

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

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CURE Epilepsy @cureepilepsy.bsky.social · Sep 9

🔬 Epilepsy Research News:
Hippocampal low-frequency stimulation (LFS) in a mouse model of drug-resistant focal epilepsy (MTLE) led to:

🔻 Reduced seizures
🧬 Reversed memory deficits
🧠 Better synaptic health

🔗 Read more: https://bit.ly/4pekViu

Long-term Hippocampal Low-Frequency Stimulation Alleviates Focal Seizures, Memory Deficits and Synaptic Pathology in Epileptic Mice

Insights into the seizure type-specific effects of hippocampal low-frequency stimulation, and support for the idea that it could contribute to enhanced seizure control and quality of life in Mesial te...

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CURE Epilepsy @cureepilepsy.bsky.social · Sep 5

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

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CURE Epilepsy @cureepilepsy.bsky.social · Sep 4

Brain #insulin resistance may link #Alzheimer’s and #epilepsy — new research supports the "type 3 diabetes" hypothesis and its role in both memory loss and #seizures. A promising step toward better understanding and #treatment. 🧠✨

Learn more: https://bit.ly/44I1ypW

Insulin Resistance in the Brain may Link Alzheimer’s and Epilepsy

New research has shown that the process of insulin resistance in the brain affects both Alzheimer's disease and epilepsy and may be a linking factor between the two diseases.

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CURE Epilepsy @cureepilepsy.bsky.social · Sep 3

Join PAME and Association of Neuroscience Nurses Sept 26 @ 1PM ET for a powerful webinar on suicide prevention, screening, and #mentalhealth in #epilepsy.

Hear from expert clinicians + a mother’s story of loss and advocacy through Widdy’s Work.

📅 Register: https://bit.ly/4mLG16t

AANN and PAME Webinar: Seeing the Whole Patient: Suicide, Screening, and Mental Health in Epilepsy

Join us live on September 26th at 12pm CT (10am PT/11am MT/1pm ET) for this webinar, presented by AANN and PAME (Partners Against Mortality in Epilepsy). This webinarwill discuss the personal and emot...

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CURE Epilepsy @cureepilepsy.bsky.social · Sep 3

New research links high blood pressure during #pregnancy to an increased risk of #seizures in children. Maternal health may play a critical role in long-term #neurological outcomes.

🔗 Read more: https://bit.ly/4kF0yHT

#EpilepsyResearch #MaternalHealth #SeizurePrevention

High Blood Pressure in Pregnancy Linked to Increased Risk of Seizure in Children

A new study has revealed a significant association between high blood pressure during pregnancy (gestational hypertension) and an increased risk of seizures in children.

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CURE Epilepsy @cureepilepsy.bsky.social · Sep 2

New research links high blood pressure during #pregnancy to an increased risk of #seizures in children. Maternal health may play a critical role in long-term #neurological outcomes.

🔗 Read more: https://bit.ly/4kF0yHT

#EpilepsyResearch #MaternalHealth #SeizurePrevention

High Blood Pressure in Pregnancy Linked to Increased Risk of Seizure in Children

A new study has revealed a significant association between high blood pressure during pregnancy (gestational hypertension) and an increased risk of seizures in children.

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Reposted by CURE Epilepsy

EveryLife Foundation for Rare Diseases @everylifeorg.bsky.social · Sep 2

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

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CURE Epilepsy @cureepilepsy.bsky.social · Sep 1

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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CURE Epilepsy @cureepilepsy.bsky.social · Aug 29

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/

Promotional graphic titled 'Stand Together Against Prolonged Seizures' featuring a silhouette of people with raised arms against a starry night sky.

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CURE Epilepsy @cureepilepsy.bsky.social · Aug 28

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

Event banner for Night of Discovery by CURE Epilepsy, featuring names of Platinum sponsors including Cafaro-Livingston Charitable Trust and Grosvenor GCM, and Diamond sponsors Lisa & Mike Cotton and The Ann G. & James B. Ritchey Foundation.

Reposted by CURE Epilepsy

epilepsyexplained.com @epilepsyexplained.com · Aug 27

The BIPARTISAN National Plan for Epilepsy is incredibly important. Please learn about it and support it, including contacting your representatives and senators.

CURE Epilepsy @cureepilepsy.bsky.social · Aug 27

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.

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CURE Epilepsy @cureepilepsy.bsky.social · Aug 28

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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CURE Epilepsy @cureepilepsy.bsky.social · Aug 27

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.

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