CURE Epilepsy
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cureepilepsy.bsky.social
CURE Epilepsy
@cureepilepsy.bsky.social
60 followers 87 following 46 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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cureepilepsy.bsky.social
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
8-Year-Old Has Disease So Rare It Doesn't Have a Name. Now He's First in the World to Receive Treatment (Exclusive)
Amber Freed tells PEOPLE how she worked for years to find a treatment for her son Maxwell's SLC6A1 diagnosis, and finally got the treatment administered in September, making history in the process.
bit.ly
December 19, 2025 at 6:13 PM
cureepilepsy.bsky.social
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
Febrile Seizures – CURE Epilepsy
Seizure types are classified by where they begin in the brain, consciousness changes, and symptoms. Learn how each type presents and is managed.
bit.ly
December 15, 2025 at 4:53 PM
cureepilepsy.bsky.social
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
North East epilepsy brain implant trial gives ‘bit of hope’ - BBC News
Adam Atkinson has an implant in his brain which is tracking the seizures he experiences.
bbc.in
December 11, 2025 at 3:06 PM
cureepilepsy.bsky.social
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
December 5, 2025 at 6:51 PM
Reposted by CURE Epilepsy
epilepsiajournal.bsky.social
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
December 4, 2025 at 3:36 PM
cureepilepsy.bsky.social
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
December 3, 2025 at 5:54 PM
cureepilepsy.bsky.social
🚨 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
December 1, 2025 at 5:08 PM
cureepilepsy.bsky.social
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
November 26, 2025 at 7:14 PM
Reposted by CURE Epilepsy
abfbrain.bsky.social
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
A background image of researchers with text that says, "Federal Funding Cuts Hinder Lifesaving Brain Research, written by Michelle Heritage. Featured in USA Today."
November 24, 2025 at 6:35 PM
Reposted by CURE Epilepsy
stefanbarakat.bsky.social
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:
BRAIN-MAGNET: A functional genomics atlas for interpretation of non-coding variants
BRAIN-MAGNET, a convolutional neural network trained on 148,198 functionally tested non-coding regulatory elements, predicts enhancer activity directly from DNA sequence and identifies nucleotides ess...
www.cell.com
November 20, 2025 at 9:38 AM
cureepilepsy.bsky.social
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
Personalizing Electrical Stimulation for Focal Epilepsy
The connectivity networks between the thalamus and cortex — termed thalamocortical hodology — may be used to treat focal epilepsy.
bit.ly
November 20, 2025 at 9:09 PM
cureepilepsy.bsky.social
🚨 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
Seizure Rescue Meds – CURE Epilepsy
Learn about seizure recuse medications, including who they can help and what they do. Includes educational resources.
bit.ly
November 13, 2025 at 6:30 PM
cureepilepsy.bsky.social
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
New Study Brings Hope and Guidance for People Newly Diagnosed with Focal Epilepsy - Westchester Medical Center Health Network
A WMCHealth-led study finds most people with newly diagnosed focal epilepsy can achieve seizure freedom, but it often takes over a year and multiple treatments. The research offers hope, clearer expec...
www.wmchealth.org
November 10, 2025 at 5:13 PM
cureepilepsy.bsky.social
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
Epilepsy Awareness Month
Celebrate Epilepsy Awareness Month in November with CURE Epilepsy—help educate, advocate, and inspire action toward a world without epilepsy.
bit.ly
November 3, 2025 at 9:42 PM
cureepilepsy.bsky.social
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
Genetic testing in epilepsy: Variants of uncertain significance (VUS) - Dr. Gemma Carvill // International League Against Epilepsy
bit.ly
October 29, 2025 at 5:00 PM
cureepilepsy.bsky.social
📅 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
Promotional image for the Partners Against Mortality in Epilepsy conference in Atlanta, featuring three attendees focused on a presentation, with event details and a 'Register Today!' call to action.
October 24, 2025 at 8:14 PM
Reposted by CURE Epilepsy
amepilepsysoc.bsky.social
It's not too late to register for #AES2025! #epilepsy #neurology

📍 Atlanta | Dec 5–9
✅ Register now: buff.ly/LfiKcir
October 23, 2025 at 6:54 PM
cureepilepsy.bsky.social
📢 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
October 22, 2025 at 2:16 PM
cureepilepsy.bsky.social
📣 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...
bit.ly
October 21, 2025 at 6:08 PM
cureepilepsy.bsky.social
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.
October 21, 2025 at 6:06 PM
cureepilepsy.bsky.social
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...
bit.ly
September 26, 2025 at 9:15 PM
cureepilepsy.bsky.social
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.
September 25, 2025 at 7:49 AM
cureepilepsy.bsky.social
Thank you so much for supporting Night of Discovery and making it an evening we'll never forget!
sklifescience.bsky.social SK Life Science, Inc. @sklifescience.bsky.social · Sep 24
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...
September 24, 2025 at 6:50 PM
cureepilepsy.bsky.social
🧬 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
bit.ly
September 23, 2025 at 6:14 PM
cureepilepsy.bsky.social
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
September 19, 2025 at 8:54 PM