8-year-old Maxwell, with a disease so rare it didn’t even have a name, just became the first to receive a breakthrough gene therapy thanks to relentless research and breakthrough gene therapy. Hope in action. 💙 #raredisease #epilepsy #gentics Full story: https://bit.ly/4oRXtWV

Our febrile #seizures overview provides a clear summary of febrile seizure types, causes, risk profiles, diagnostic considerations, and current understanding of recurrence and future epilepsy risk. Learn more: https://bit.ly/4pZozN2 #epilepsyresearch #neurology #pediatrics

A UK #epilepsy trial using a #brain implant is uncovering #seizures doctors couldn’t detect before—including during sleep. Families say the research is giving them “a little bit of hope.” 🧠 #Epilepsy #Neurotech #Hope Learn more: https://bbc.in/44wsZmn

IS can look like reflux or a startle reflex. When in doubt—record, refer, and get an EEG. Every day of delay increases the risk of permanent damage. Learn more at infantilespasms.org. #ISAW2025 #TimeIsBrain #PediatricCare

Risks can be minimized by avoiding bright flashing lights, covering one eye, wearing dark glasses, and staying far back from screens. doi.org/10.1111/epi.... #epilepsy #ILAE #epilepsia #guidelines #patternsensitiveseizures #photoparoxysmalresponse #photosensitiveseizures #reflexepilepsy

Every moment matters. Infantile spasms require rapid recognition and referral. Treatment within the first week can change a child’s life. Learn more at infantilespasms.org #ISAW2025 #Pediatrics #TimeIsBrain

🚨 It’s Infantile Spasms Awareness Week. IS can look like quick head drops or small jerks, but they’re a medical emergency that can cause brain damage. Early action can change a child’s future. When it comes to IS, Time is Brain. Learn more at infantilespasms.org. #ISAW2025

Childhood absence epilepsy (CAE) often appears as brief staring spells that can be easy to miss. In our new Epilepsy Explained episode, we breaks down what CAE looks like, how it’s diagnosed, and what treatments can help: https://bit.ly/4oUNKjK

Executive Director Michelle Heritage contributed an opinion piece in today’s edition of @usatoday.com in support of #MedicalResearch funding. Scientists are on the verge of breakthroughs; the government should value and continue to fund research. #ResearchFunding 🔬🧠 Read the essay ➡️ buff.ly/Tc4CiJ4

Very pleased to share our latest paper published in Cell: BRAIN-MAGNET: A functional genomics atlas for interpretation of non-coding variants: Cell www.cell.com/cell/fulltex... @cellpress.bsky.social, @cp-cell.bsky.social, @ruizhideng.bsky.social #enhancer here is a thread about our findings:

Highlights from epilepsy research this month: 🧬Fixing a Genetic Brain-Disorder Defect in Mice: https://bit.ly/4pkYA2j 🧠Personalizing Electrical Stimulation for Focal Epilepsy: https://bit.ly/3K07Qd5 🧪Creating CBD-Like Seizure Treatments Without Cannabis: https://bit.ly/4i6pXKM

🚨 Take a look at the practical guide to #seizure rescue #medications, what they are, when to use them & what to ask your #neurologist. Dive in: https://bit.ly/4qWJAZO. Made possible by support from Neurelis. #rescuemedication #epilepsy #epilepsytreatment

Research from the Human Epilepsy Project offers hope for people newly diagnosed with focal epilepsy, showing that seizure control takes time, teamwork, and personalized care. Early specialist support and precision medicine are key to better outcomes. 🔗 https://bit.ly/46sZsuV

Happy Epilepsy Awareness Month! Join us celebrating the breakthroughs that help people live better—and reminding everyone why supporting research matters. 💜 #EpilepsyAwareness #CUREepilepsy https://bit.ly/436dtgg

When a genetic test in epilepsy returns a VUS, what’s next? 🧬 Dr. Gemma Carvill and the #ILAE team explain how clinical context + data sharing + the right tools can narrow the uncertainty. #Epilepsy #Genetics #VUS Learn more: https://bit.ly/47uFyiI

📅 Mark your calendars! Join leading voices in patient #advocacy, #epilepsy research, and #SUDEP prevention at the 2025 #PAME Conference December 4, 2025, in #Atlanta. Registration is now open! https://bit.ly/3WQB4he

It's not too late to register for #AES2025! #epilepsy #neurology 📍 Atlanta | Dec 5–9 ✅ Register now: buff.ly/LfiKcir

📢 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

📣 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

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.

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

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!

🧬 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

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

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

🔬 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

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

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

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

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

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

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

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

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

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

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.

ICYMI: From #lab discovery to #clinicaltrial in just 3 years — an FDA-approved drug for one disease is now giving hope to kids with rare epilepsies like SLC6A1 and STXBP1. Read more: bit.ly/3Jwf5bS #epilepsy #raredisease #epilepsytreatment #fdaapproved

💡 “If the funding stops, that’s only going to impede things in progress.” @uwmadison.bsky.social's @begidal.bsky.social‬ discusses how #genetics, #neurotech & #CBD are reshaping treatment and why #research funding is critical. 🔗 bit.ly/4orQQvI #researchfunding #uwmadison #clinicalstudies

🧬🔬💊 A hopeful discovery: phenylbutyrate, an existing FDA-approved drug, may help reduce #seizures in rare #genetic epilepsies like #SLC6A1 and #SYNGAP1. This could speed up treatment timelines for families urgently seeking options. Learn more: https://bit.ly/3H8Le8H

Join us 9/20 for Night of Discovery! Our annual Chicago Benefit is an evening of cocktails, dinner, and dancing, where we celebrate our collective achievements, hear stories from people impacted by epilepsy, and raise critical funds for epilepsy research. e.givesmart.com/events/H1K/

Join our #Epilepsy #ServiceDogs: The Science Behind the Sniff 🐕 webinar on 9/4 at 5 PM CT! Learn about the science and about the process of getting an epilepsy service dog. https://bit.ly/4mnCCub Supported by UCB, Founding Partner of the CURE Epilepsy Community Enrichment Program

In our latest #EpilepsyExplained episode, we answer common questions about #GeneTherapy. What it is and how it could benefit those living with epilepsy? Watch to find out! https://bit.ly/4moCnPJ

Congrats to @berrakugur.bsky.social ‬from @pdc-lab.bsky.social for being granted the 2024 Rare Epilepsy Partnership Award, co-funded by @cureepilepsy.bsky.social ‬ & FAM177A1 research fund! She will use patient-derived neurons and brain organoids to study FAM177A1-related neurodevelopmental disorder

Here is what we featured in the August edition of Epilepsy Research News 🧵 Enhancing Sudden Unexpected Death in Epilepsy (SUDEP) research through development of pre-clinical common data elements. www.cureepilepsy.org/news/enhanci...