CURE Epilepsy

11/21/2025

Behind every dollar spent on research funding is a story of courage and perseverance. Each of the people you see in this post have participated in clinical trials. Their stories highlight what this research means - hope, progress, and real lives changed. 🔬❤️ ✨ Check out their stories here: https://www.cureepilepsy.org/get-involved/awareness-days/epilepsy-awareness-month/

11/20/2025

💜 Citizen Health’s free platform is a game changer for epilepsy patients and caregivers. 💜

Join at www.citizen.health/cure-epilepsy and Citizen Health will collect your records from all your providers and make your full health history easily accessible, with an answers mode that helps with everything from doctor’s appointment prep to medication lists to IEP’s, insurance appeals and more.

And with Citizen Health your data can help drive research, if you choose.

It’s a tool built for epilepsy families by caregivers who get it, partnering with over 100 patient advocacy groups.

💜 This Epilepsy Awareness Month, Citizen has a sweepstakes where new US epilepsy patients on the platform will be entered to win a $2500 voucher to use on a special trip. www.citizen.health/cure-epilepsy 💜

Disclaimer: Paid placement by Citizen Health. Does not constitute an endorsement by or affiliation with CURE Epilepsy.

11/19/2025

ICYMI: Today’s scientists are doing the impossible: editing genes, restoring circuits, and turning bold ideas into breakthroughs. But that work needs to be defended. With funding on the line, we must raise our voices, advocate, and invest in a future free from seizures. 🔬❤️ Reshare to your community to spread the word!

11/13/2025

Jeavons Syndrome, also called Epilepsy with Eyelid Myoclonia, often appears as quick eyelid jerks, eyes rolling upward, or sensitivity to light - signs that can be easy to miss.

This rare epilepsy type usually starts in childhood and can last into adulthood, but with understanding and support, people living with Jeavons Syndrome can thrive.

Let’s spread awareness on this often overlooked condition. 💙

11/13/2025

💙 Today is Jeavons Syndrome Awareness Day! A time to spread understanding and support for those living with Epilepsy with Eyelid Myoclonia (EEM), a rare form of epilepsy. Awareness builds compassion, research drives progress, and community brings hope. To everyone living with Jeavons Syndrome and their loved ones: we see you, we support you, and we stand with you today and every day!

11/13/2025

Curious if rescue medications are right for you or your loved one? Explore what rescue medications are, how they work, when they’re used, and how to discuss them with your care team. This resource was made possible by support from Neurelis.

👉 Read more: https://bit.ly/4qWJAZO

Learn about seizure recuse medications, including who they can help and what they do. Includes educational resources.

11/12/2025

In the late 1990s, Laura's neurologist made a game-changing suggestion. Laura was a teenager and had been struggling with frequent seizures since she was little. Early in her epilepsy journey, Laura's care team tried to find where her seizures started in the brain. The images had been too unclear, so Laura was not considered a candidate for surgery.

That changed when her neurologist suggested that Laura participate in an NIH clinical trail testing a then cutting-edge imaging technology; the fMRI. Watch to learn what happened next.

11/07/2025

Need a pick-me-up? Meet Kai, whose story is a powerful reminder that epilepsy may take a lot, but it doesn’t take all. 🧬💪

Kai’s epilepsy journey began when he was just ten months old. What seemed like a routine fever and a one-time seizure turned into a much more serious condition when, only weeks later, he experienced a prolonged and life-threatening seizure. His family soon learned that his condition was more than a simple febrile seizure.

An EEG revealed that Kai was having dozens of myoclonic seizures every minute, and he received an official diagnosis of generalized epilepsy. Over the next year he tried several medications, but each came with significant side-effects and none brought him full seizure control. Genetic testing uncovered that his epilepsy stems from a mutation in the SCN1A gene, which helped the family and doctors understand his condition’s underlying mechanism and adjust treatment accordingly.

With that insight, Kai’s care team stopped the sodium-channel-blocking medication (which was actually contraindicated for his SCN1A-mutation type epilepsy) and switched to therapies better suited to his kind of epilepsy. The change brought marked improvement in his seizures, his energy and engagement increased, and he began to thrive more. Later, the family adopted the ketogenic diet and saw a dramatic drop in seizure frequency.

By age four, Kai’s neurologist declared he did not have the most severe form of SCN1A-related epilepsy (Dravet syndrome), but rather a condition on the spectrum called GEFS+ (Genetic Epilepsy with Febrile Seizures Plus). Kai may still have seizures, but he is living a beautiful, full life filled with love, joy, and determination.

Each story belongs in the journey toward a cure. ❤️🔬🌟 Share yours today: https://bit.ly/4oXFQpr

11/06/2025

When our board member, Kelly Cervantes, was diagnosed with breast cancer, her doctors immediately knew how to treat it thanks to decades of research and advocacy. But when her daughter Adelaide was diagnosed with epilepsy at 7 months old, their family faced years of uncertainty, inconclusive tests, and treatments that didn’t work.

“I couldn’t help but wonder how my daughter’s diagnostic and treatment journey would have been different if epilepsy had received the same financial investment and been researched with the same ferocity that breast cancer has.” 💜

Read Kelly’s powerful WBUR op-ed on the life-changing impact of research funding:

🔗

Breast cancer research is exceptionally well funded. Other diseases, including epilepsy — which took my little girl’s life — are less so. With the Trump administration slashing research budgets and funding being delayed or withdrawn, I can’t help but wonder how many more people will suffer a...

11/05/2025

This month on Seizing Life, Dr. Kendra Cagniart shares her son Christophe’s incredible epilepsy journey, from a traumatic birth and early seizures to two years of seizure freedom at age 9. As both a neurologist and mom, Dr. Cagniart offers a unique and inspiring perspective on hope, perseverance, and the power of progress.

💫 Watch their remarkable story here: https://bit.ly/49BKtAM

11/03/2025

It's Epilepsy Awareness Month! Join us in a month-long celebration of the real-world impact of epilepsy research on people’s lives. With the U.S. research landscape under threat, it's more important than ever to raise awareness of the life-changing power of research. Join us in supporting science that saves lives! Share info from this page with your friends:

Celebrate Epilepsy Awareness Month in November with CURE Epilepsy--help educate, advocate, and inspire action toward a world without epilepsy.

10/31/2025

Tomorrow is Lennox-Gastaut Syndrome (LGS) Awareness Day, a day to stand with children and families living with this rare and severe form of epilepsy.

Today, we honor Bradley’s story of courage, resilience, and love.

Bradley was born on October 10, 2019, after a difficult delivery where he wasn’t breathing at birth. His umbilical cord was wrapped multiple times around his neck, leading to hypoxic-ischemic encephalopathy (HIE), a brain injury caused by lack of oxygen. He spent 61 days in the NICU fighting to survive.

At just 19 days old, he underwent a tracheostomy after being diagnosed with bilateral vocal cord paralysis. Despite these challenges, Bradley continued to grow stronger, but in 2020, he began having seizures. By early 2021, doctors confirmed Lennox-Gastaut Syndrome (LGS).

LGS is a complex, drug-resistant epilepsy that affects childhood development and quality of life. Yet through it all, Bradley’s smile, spirit, and the unwavering dedication of his parents inspire everyone who hears his story.

As his mom shared: “We wouldn’t change it for the world. He is our sunshine.” ☀️

💙 Tomorrow, let’s raise awareness for Bradley and all those living with LGS. Share his story and help bring hope to families fighting for answers and better treatments.

Read Bradley’s full story here ➡️ https://bit.ly/47v72ET