CURE Epilepsy

A seizure action plan, or SAP, can be a critical resource for those with unpredictable seizures. Being prepared for an emergency ahead of time can increase seizure safety and minimize the risk of injury.

Learn more about SAPs and other resources related to epilepsy here: https://cureepilepsy.org/understanding-epilepsy/epilepsy-basics/seizure-action-plan/

Scientists at McGill University have identified a genetic cause of severe seizures in children, with the help of Kelly Cervantes and her daughter Adelaide. The research team analyzed samples from Adelaide and others with mutations in a gene called DENND5A. The scientists found that mutations in this gene stopped brain cells from dividing properly during development. The finding provides answers to families of people with this rare genetic condition.
https://www.cureepilepsy.org/news/study-identifies-genetic-cause-of-severe-seizures-in-children/

Study Identifies Genetic Cause of Severe Seizures in Children Scientists at McGill University have identified a genetic cause of severe seizures in children, with the help of Kelly Cervantes's daughter Adelaide.

Over the past year, CURE Epilepsy has undertaken a strategic planning process to analyze our values, our priorities, and our research portfolio. Conversations with this community as part of our process have led us to refine our mission. Our new mission is to fund breakthrough research that will transform the lives of people living with epilepsy as we lead the search for a cure. Our fundamental work and vision remain the same, but we’ve evolved our language to better reflect who we are and the impact that we aim to have on people’s day-to-day lives as we march together toward a cure.

We have also created a new and improved website with even more educational information. Check out CUREepilepsy.org to explore our new website!

🏃🏊🚲 Team CURE Epilepsy spotlight!

Our Chicago Triathlon participants, organized by Kris Sadens and his team of eight close friends from the northern Chicago suburbs, set a goal to raise $50K for critical epilepsy research and to date, has raised over $80K with donations still coming in! We are closer to our mission thanks to the many fundraisers who choose to support us through marathons, walk/run events, golf tournaments, and more.

For the rest of September, we challenge all of our online community to help raise epilepsy awareness by wearing purple or red during your preferred summer activity (running, biking, swimming, playing golf, playing soccer, etc.)! Take a photo of yourself and tag us on social! Let’s help raise epilepsy awareness as we continue to lead the search for a cure.

Need some CURE Epilepsy apparel to add to your wardrobe to help raise awareness? Visit the CURE Epilepsy Store! https://cure-epilepsy-swag-store.myshopify.com/

Each epilepsy journey within the epilepsy community is unique. Read Matt’s story and more here: https://cureepilepsy.org/personal-stories/

Get your tickets now to join us Tuesday, September 24 at Guaranteed Rate Field in Chicago for Epilepsy Awareness Night at the Ballpark with the Chicago White Sox! Each ticket sold includes a $5 donation in support of CURE Epilepsy so be sure to bring the whole family out as multiple ticketing types are available for purchase.

Epilepsy Awareness Night at the Ballpark This event is not only an opportunity to enjoy America's favorite pastime but also a chance to stand in solidarity with those affected by epilepsy.

An EEG, or electroencephalogram, is an invaluable tool for identifying seizures, diagnosing epilepsy, and monitoring brain activity in order to guide treatment. Find out more about the important information an EEG can provide at the following link: https://cureepilepsy.org/for-patients/understanding/

Congratulations to friend of CURE Epilepsy, Jon Tuteur, on the publication of his book, Seizing Today: Discovering Purpose and Authenticity in a Life-Changing Diagnosis! You can find the book wherever books are sold. And, check out his recent Seizing Life episode to hear more of his incredible story.

Seizing Life episode: https://cureepilepsy.org/seizing-life/the-sudden-and-life-altering-impact-of-adult-onset-epilepsy/

Join us Tuesday, September 24 at Guaranteed Rate Field in Chicago for Epilepsy Awareness Night at the Ballpark with the Chicago White Sox! Each ticket sold includes a $5 donation in support of CURE Epilepsy so be sure to bring the whole family out as multiple ticketing types are available for purchase.
https://cureepilepsy.org/event_type/epilepsy-awareness-night-at-the-ballpark-with-the-chicago-white-sox/

Events Signature Events, Community Events, CURE Epilepsy-Sponsored Conferences, Conferences for Families, Webinars

Even if you missed it live, watch the recording of this back-to-school webinar from Epilepsy Alliance America for families with a student with epilepsy. This webinar covers seizure action plans, learning plans, rescue medications, and more.

Back to School Webinar 2024 Epilepsy Alliance America and Epilepsy Alliance Louisiana's Back To School Webinar covers important topics for students with epilepsy, such as seizure action...

Do you know the difference between a generalized onset and a focal onset seizure? Learn more about the different classifications of seizures and explore other important resources at https://cureepilepsy.org/for-patients/understanding/

The latest e-Forum of the 2024 series was a hit! Of the participants who completed the post-session survey, 94% said the e-forum met or exceeded their expectations. This session is available on demand for all to view at www.ilae.org/eforum-2.

Knowing about Sudden Unexpected Death in Epilepsy (SUDEP) and SUDEP risk factors can help mitigate you or your loved one's risk. Learn more in this short video.

Sharing a short segment on , its risk factors, and the importance of and management.

This feature is led by WebMD's Chief Medical Officer, Dr. John Whyte. It features Dr. Stephan Schuele, chief of Epilepsy and Clinical Neurophysiology in the Department of Neurology at Northwestern Medicine, and Tom Stanton, President of The Danny Did Foundation.

WATCH: https://www.webmd.com/epilepsy/video/schuele-stanton-epilepsy

Thank you for shining a light on SUDEP in this important interview!

A new study suggests that the general anesthetic propofol may hold the keys to developing new treatment strategies for epilepsy and other neurological disorders. According to researchers at Weill Cornell Medicine and Linköping University in Sweden, scientists "might be able to exploit propofol’s unique way of binding to HCN1 for the treatment of drug-resistant epilepsies and other HCN1-linked disorders."

Propofol Shows Potential for Treating Epilepsy and Neurological Disorders According to a new study led by researchers at Weill Cornell Medicine and Linköping University in Sweden, the general anesthetic propofol may hold the keys to developing new treatment strategies for epilepsy and other neurological disorders.

Grateful for the opportunity to meet with longtime CURE Epilepsy Champion Channing Seideman and her family including her service dog, Bishop! A big thank you to The Governor Modern Diner for having us and for their support through the years to both CURE Epilepsy and Team Channing.

Register today for the upcoming PAME conference! PAME meetings are scientifically rigorous and informed by the experiences of people impacted and bereaved by epilepsy. They include updates and discussions on the latest research, as well as directions in awareness and education.

Registration is now open for the 8th PAME Conference on December 5th at the Sheraton Grand Hotel in Los Angeles, CA.

Registration: https://my.aesnet.org/register-annual-meeting
Details: https://pameonline.org/2024-pame-conference/

This year’s keynote speaker is Libby Boyce of The Cameron Boyce Foundation. Plenary sessions will explore ways to enhance early recognition to drive the prevention of epilepsy-related mortality and the state of innovation. Breakout sessions will feature presentations on SUDEP research models, improving risk disclosure & death certification at the state level through legislation, neurodegeneration across the life span, and the role of medical devices in .

Hope to see you there!