CURE Epilepsy

10/28/2023

Connect with us on Facebook Messenger today to get updates on our progress towards a cure for epilepsy, ideas on ways to make a difference within the epilepsy community, inspirational stories, and more.
https://bit.ly/46JYpVa

10/27/2023

See the latest CURE Epilepsy Update with info on the 25th Anniversary Champions Challenge, recordings of our latest Treatment Talks, some of the latest research, and more.
https://www.cureepilepsy.org/news/cure-epilepsy-update-october-2023/

An Update full of events and research for our community!

10/25/2023

Dr. Goldstein's team is conducting vital research on Sudden Unexpected Death in Pediatrics (SUDP) and supporting bereaved parents through their grief journey.
Learn about their efforts: https://www.cureepilepsy.org/seizing-life/searching-for-answers-providing-support-and-understanding-grief-after-the-death-of-a-child/

Boston Children’s Hospital

10/25/2023

Join us tomorrow for our webinar where we will discuss the importance of timely surgical evaluation for all epilepsy patients and address disparities in access to life-changing treatment options. Register today: https://www.cureepilepsy.org/webinars/webianr-surgical-treatment-options-as-tools-to-reduce-the-risk-of-mortality-in-epilepsy/

PAME: Partners Against Mortality in Epilepsy

The pediatric epilepsy journey can be challenging and scary. Surgery has been less utilized but research has shown that it can be an effective treatment…

10/25/2023

Thank you to our recent CURE Epilepsy Champions who have helped us raise critical epilepsy research funds and who are getting us one step closer to the completion of our 25th Anniversary Champions Challenge – raising $425K for 25 years!

Kris Sadens ran, biked, and swam in honor of his son, Silas, and the 10-year anniversary of Silas’ diagnosis, by participating in the Chicago Triathlon. Erin Monast, her daughter Reagan, and family hosted the second annual Reagan’s Run, a 5K and 1-mile fun run in Eastern Pennsylvania. Champions also got out their golf clubs from coast to coast to raise funds and awareness for epilepsy in two separate events. The 5th annual Commish Open, in memory of Aiden Nichols Long, was held in Maryland and the 3rd annual Epilepsy Awareness Golf Tournament honoring Colton Grothe and Joey Hart took place in Willamette Valley, Oregon.

If you would like more information about the Champions Challenge or hosting your own unique fundraising event, please visit: https://give.cureepilepsy.org/campaign/fundraise-for-cure-epilepsy/c410068 Every participating Champion host will receive a free raffle entry for one trip for a family of four to Epilepsy Awareness Day 2024 at Disneyland California, including airfare, hotel, epilepsy expo, and park tickets. Also, every Champion host who raises over $1,000 will receive a CURE Epilepsy Treasure Pack, with merchandise to help show your CURE Epilepsy pride.

10/23/2023

We want your feedback! Take a short survey about the resources we provide, our website, and our mission statement to help us evolve and improve our resources for the epilepsy community.
https://wss.pollfish.com/link/e7342dd8-2fe6-46f6-9579-597680898ab0

CURE Epilepsy is a nonprofit organization dedicated to finding cures for epilepsy.

10/20/2023

Sudden Unexpected Death in Epilepsy (SUDEP) isn't just a statistic; it's a personal reality for many families. CURE Epilepsy is driving research on SUDEP registries, risk factors, and genetic mechanisms. Find out how our initiatives are changing the game in understanding and preventing SUDEP.
https://www.cureepilepsy.org/news/cure-epilepsy-discovery-leading-the-charge-on-research-and-awareness-of-sudden-unexpected-death-in-epilepsy-sudep/

This work provides insights into changes in brain activity that may be extended to people at risk of developing epilepsy after a brain injury.

10/19/2023

No life should be lost due to . As we continue to honor this week, we share stories of those within our community who have lost their lives due to ( ). Hear Dylan's story from his sister Hannah Whitten, who is now a CURE Epilepsy Board Member: https://www.youtube.com/watch?v=DBZ1VUnMv_c

10/19/2023

No life should be lost due to . As we continue to honor this week, we share stories of those within our community who have lost their lives due to ( ). Read Mickey's story: https://www.cureepilepsy.org/personal_stories/mikeys-story/

10/19/2023

No life should be lost due to . As we continue to honor this week, we share stories of those within our community who have lost their lives due to ( ). Read Christopher's story: https://www.cureepilepsy.org/personal_stories/chriss-story/

10/19/2023

No life should be lost due to . As we continue to honor this week, we share stories of those within our community who have lost their lives due to ( ). Hear Cameron Boyce's mother, Libby Boyce, explain Cameron's story: https://www.youtube.com/watch?v=vQoeHlXo0tg

The Cameron Boyce Foundation

10/19/2023

No life should be lost due to . As we continue to honor this week, we share stories of those within our community who have lost their lives due to ( ). Read Cameron's story: https://www.cureepilepsy.org/personal_stories/camerons-story/

10/19/2023

No life should be lost due to . As we continue to honor , we share stories of those in our community who have lost their lives due to ( ). Hear Anthony's story & explore SUDEP research: https://www.youtube.com/watch?v=Sad62EfPEKg&t=1s

10/19/2023

No life should be lost due to . As we continue to honor this week, we share stories of those within our community who have lost their lives due to ( ). Read Isaiah's story: https://www.cureepilepsy.org/personal_stories/isaiahs-story/

Isaiah Stone Foundation

10/19/2023

No life should be lost due to . As we continue to honor this week, we share stories of those within our community who have lost their lives due to ( ). Read Andrew's story: https://www.cureepilepsy.org/personal_stories/andrews-story/

10/18/2023

This week on Seizing Life, Dr. Goldstein explains how a special program works toward providing answers to parents who have lost a child, supporting bereaved families through peer grief groups, and conducting research into both childhood mortality and parental grief.
https://www.cureepilepsy.org/seizing-life/searching-for-answers-providing-support-and-understanding-grief-after-the-death-of-a-child/

Boston Children’s Hospital

10/18/2023

Today is SUDEP Action Day. This is a day to raise awareness for and educate those inside and outside of the epilepsy community about Sudden Unexpected Death in Epilepsy (SUDEP). Check out our SUDEP Action Day page for resources on SUDEP and ways you can help spread awareness. https://www.cureepilepsy.org/event_type/sudep-action-day-2023/

10/18/2023

Our auction is now open to bid on amazing seats to some of Broadway's hottest shows, and you can get an exclusive meet & greet with some of the stars!
https://give.cureepilepsy.org/event/hamilton-unplugged/e499293

10/17/2023

Join us at Epilepsy Awareness Day at Disneyland at the end of this month to raise epilepsy awareness and gather as a community! Check out what programing we will have at the event! Learn more and register here: https://epilepsyawarenessday.org/

10/16/2023

This Wednesday is SUDEP Action Day, an international event to raise awareness about Sudden Unexpected Death in Epilepsy (SUDEP). Unfortunately, many people with epilepsy are unaware of SUDEP, its risk factors, and ways to mitigate their risk.
Share these infographics to help spread awareness!

Learn more about SUDEP and SUDEP Action Day: https://www.cureepilepsy.org/event_type/sudep-action-day-2023/

10/14/2023

The curtains are closing on your chance to win a trip to NYC to see Hamilton on Broadway! Raffle tickets start at just $10 so get yours now before 11:30pm CT!
https://give.cureepilepsy.org/event/my-shot-at-epilepsy-hamilton-raffle/e519291

10/13/2023

Our newest Treatment Talk, Seizure Emergencies: Delivery Methods and Treatment Options, is now available to watch! This Treatment Talk discusses seizure emergencies and the different delivery methods and treatment options for the current rescue medications with neurologist, Dr. James Wheless, and Karen Barnette, mother to a patient of Dr. Wheless’ diagnosed with Dravet syndrome.
https://www.cureepilepsy.org/event_type/treatment-talk-seizure-emergencies-delivery-methods-and-treatment-options/

This Treatment Talk premiered on CURE Epilepsy’s YouTube channel on Friday, October 13 and discusses seizure emergencies and the different delivery methods and treatment options…

10/12/2023

Great opportunity for women with epilepsy to come together virtually this Sunday! Thank you to Camp YouCan for all you do for the epilepsy community.

In this podcast episode, Meg reveals how epilepsy impacted so many aspects of her life; from being a student, to her budding nursing career, to dating, to ha...

10/11/2023

on our last , Kate shared her daughter's journey from first being reassured by a pediatrician that there was nothing to be concerned about, to seeing a neurologist who then diagnosed Charlotte with Infantile Spasms.

https://www.cureepilepsy.org/seizing-life/infantile-spasms-diagnosis-and-treatment-journey-inspires-childrens-book/

Char Bear Keeps Dancing

10/11/2023

🎫 Get your raffle entries for the My Shot at Epilepsy: Hamilton Raffle for a chance to see Hamilton on Broadway ⭐ before Miguel Cervantes leaves the role of Hamilton in 2024!
https://give.cureepilepsy.org/event/my-shot-at-epilepsy-hamilton-raffle/e519291

10/10/2023

Register today for our free webinar, Surgical Treatment Options as Tools to Reduce the Risk of Mortality in Epilepsy. Surgery has been less utilized but research has shown that it can be an effective treatment option, especially for those living with drug-resistant epilepsy. Surgery can reduce seizure frequency and lessen the risk of seizure-related death.
https://www.cureepilepsy.org/webinars/webianr-surgical-treatment-options-as-tools-to-reduce-the-risk-of-mortality-in-epilepsy/



This webinar is conducted in partnership with PAME: Partners Against Mortality in Epilepsy

The pediatric epilepsy journey can be challenging and scary. Surgery has been less utilized but research has shown that it can be an effective treatment…

10/08/2023

Thank you to our Team CURE Epilepsy runners who are running for us in the Chicago Marathon today! More pics coming soon!

10/07/2023

New research on a potential biomarker for acquired epilepsy helps to pave the way for preventative strategies and personalized treatments for those at risk for acquired epilepsy.
https://www.cureepilepsy.org/news/cure-epilepsy-discovery-taking-flight-awardee-makes-strides-towards-development-of-a-biomarker-with-implications-for-acquired-epilepsies/

This work provides insights into changes in brain activity that may be extended to people at risk of developing epilepsy after a brain injury.

10/06/2023

⌛ Time is running out to get your raffle entries for our My Shot at Epilepsy: Hamilton Raffle! Get your entries now for a chance to see Hamilton on Broadway before Miguel Cervantes leaves the role of Hamilton on January 7th!
https://give.cureepilepsy.org/event/my-shot-at-epilepsy-hamilton-raffle/e519291

10/06/2023

Stay tuned for our next Treatment Talk premiering Friday, October 13 on Seizure Emergencies. Hear from neurologist Dr. James Wheless and a mother of a child with Dravet syndrome (a rare epilepsy).
https://www.cureepilepsy.org/event_type/treatment-talk-seizure-emergencies-delivery-methods-and-treatment-options/

This Treatment Talk will premiere on CURE Epilepsy’s YouTube channel on Friday, October 13 and will discuss seizure emergencies and the different delivery methods and treatment…

10/05/2023

One of our industry partners is looking for caregivers to individuals with Lennox-Gastaut Syndrome (LGS) to join their Focus Group. They are looking for a diverse group of caregivers with varying demographics and experiences. Learn more: https://mailchi.mp/cureepilepsy.org/lgs-caregiver-focus-group

One of our industry partners is looking for 10 caregivers who have loved ones with Lennox-Gastaut Syndrome (LGS) to attend their Focus Group. They want to bring a diverse group of caregivers with varying demographics and experiences on LGS treatment and caregiving needs.

10/04/2023

Kate Kostolansky shares her daughter’s infantile spasms diagnosis and treatment journey and explains how these experiences inspired a children’s book to help newly diagnosed families better understand infantile spasms.
https://www.cureepilepsy.org/seizing-life/infantile-spasms-diagnosis-and-treatment-journey-inspires-childrens-book/

Char Bear Keeps Dancing

10/04/2023

Research finds there is a 5.3% increased risk for individuals with Alzheimer's to develop generalized epilepsy and there is also an increased risk for those with epilepsy to develop Alzheimer's.
https://www.news-medical.net/news/20230525/People-with-Alzheimers-disease-more-likely-to-develop-epilepsy-and-vice-versa.aspx

People with a genetic predisposition for Alzheimer's disease may have an increased risk of epilepsy and people with a certain type of epilepsy may have an increased risk of developing Alzheimer's disease, according to a study published in the May 24, 2023, online issue of Neurology®, the medical jo...

09/28/2023

Epilepsy is more than seizures. Whether due to other effects from epilepsy or side effects from antiseizure medications, individuals with epilepsy are impacted in so many ways. Read Cory's story on our website: https://www.cureepilepsy.org/personal_stories/corys-story/

👫 Share your own personal story with the CURE Epilepsy community on our website: https://www.cureepilepsy.org/personal-stories/

09/28/2023

Watch our newest Treatment Talk, featuring Dr. Juliet Knowles and one of her patients diagnosed with childhood absence epilepsy. In this Treatment Talk, we discuss the diagnosis, treatment, and prognosis of childhood absence epilepsy.
https://www.cureepilepsy.org/event_type/treatment-talk-diagnosis-treatment-and-prognosis-of-childhood-absence-epilepsy/

This Treatment Talk will discuss the diagnosis, treatment, and prognosis of childhood absence epilepsy. The talk features Dr. Juliet Knowles, Assistant Professor in Neurology at…

09/27/2023

Diagnosed with autism and epilepsy, Nick D’Amora was nonverbal for the first 12 years of his life, until a program called the Rapid Prompting Method “freed” Nick allowing him to communicate with the world around him and igniting his passion to advocate for the non-verbal, autistic community. https://www.cureepilepsy.org/seizing-life/an-extraordinary-life-of-autism-epilepsy-and-advocacy/

09/26/2023

“This work offers [people] some hope that the epilepsy research field is making progress towards understanding SUDEP mechanisms, identifying potential biomarkers for those at risk, and devising interventions to prevent these catastrophic events,” said Dr. Jack Parent, talking about the exciting research discoveries from a team that includes himself and Dr. Yu Wang (both former CURE Epilepsy grantees).
https://news.umich.edu/u-m-scientists-develop-a-new-model-for-understanding-sudden-death-in-epilepsy/

University of Michigan

Researchers at the University of Michigan have developed a model for studying one type of familial epilepsy, opening the door to understanding—and eventually targeting—the mechanisms that lead to the disorder and its associated fatalities.

09/25/2023

Win a chance to see Hamilton on Broadway! See Broadway star Miguel Cervantes, longest running star of Hamilton since 2016 in Chicago and New York City, before his incredible run ends. Prize includes:
💜 A meet & greet with Miguel
💜 Airfare for two
💜 A two-night night stay in an NYC hotel
💜 Dinner for two

https://give.cureepilepsy.org/event/my-shot-at-epilepsy-hamilton-raffle/e519291

09/23/2023

Check out the latest on , cannabidiol ( ) as an epilepsy treatment, Tuberous Sclerosis Complex ( ), a study, and more in the latest Epilepsy Research News.

New epilepsy research on CBD, a new genetic study, TSC, and more.

09/21/2023

Did you know September is National Service Dog Month? Learn about seizure alert dogs, how they detect seizures, and more in our Seizing Life episode with 4 Paws For Ability.
https://www.cureepilepsy.org/seizing-life/seizure-dogs-predicting-seizures-and-providing-comfort/

This week on Seizing Life® we talk seizure alert dogs with Jessa Kenworthy, Training Director at 4 Paws for Ability, a breeding, training, and placement organization for service dogs. Jessa provides everything you always wanted to know about seizure alert dogs, from the type of breeds that are best...