CURE Epilepsy

01/08/2026

On this month’s episode of Seizing Life®, Dr. Elinor Ben-Menachem, epileptologist, researcher and professor at the University of Gothenburg, shares insights and experiences from her 40-plus years working on clinical trials and providing care to refractory epilepsy patients.

🎙️ Tune in now! https://bit.ly/3NzULbF

01/06/2026

When it comes to medication access, people with epilepsy and caregivers often face a lot questions, decisions, and challenges. Our latest Treatment Talk with Dr. Christina Briscoe of Boston Children’s Hospital and caregiver Michele Torres discusses:

🤝 Collaborating with pharmacists

💊 Managing multiple prescriptions

🤔 Understanding branded and generic drugs

🚧 Dealing with potential insurance company barriers such as prior authorizations, filing appeals, and requesting peer-to-peer reviews

Watch here: https://www.cureepilepsy.org/treatment-talks/working_with_your_doctor_on_epilepsy_medication_access/

This video was generously supported by SK Life Science.

This Treatment Talk discusses working with your doctor to access new epilepsy drugs or switch your anti-seizure medications, and includes information on collaborating with pharmacists, managing multiple prescriptions, understanding branded and generic drugs, and dealing with potential insurance comp...

12/30/2025

Meet Hannah, a resilient woman with Tuberous Sclerosis Complex (TSC) whose life was forever changed by surgery...

"I was diagnosed with epilepsy related to TSC when I was two years old. I had begun having infantile spasms as early as four months old. I began having complex partial to tonic clonic seizures 2-3x weekly for the first 14 years of my life."

"At 14, I was found to be a candidate for a partial left temporal lobectomy which reduced my seizure frequency down to almost none."

"While I still take medication and have chosen not to drive in case of a breakthrough seizure, I am so thankful to my pediatric neurologists and neurosurgeon in Texas for a more independent life. With my seizures under control, I was able to go on to graduate high school and college (which my parents were told I would never make it through after the TSC diagnosis)."

"A cure for epilepsy would mean seizure freedom for the many friends I met at my epilepsy summer camp I was fortunate to get to attend for 4 years, as well as greater independence in our lives."

Tell your story here: https://www.cureepilepsy.org/personal-stories/

12/29/2025

For many of our staff members, our mission is personal — including our Events Manager, Madeline Felipez:

“From birthdays to galas to baby showers, I love planning parties. As CURE Epilepsy’s Events Manager, I’m proud to bring people together in celebration and hope. This work is immensely personal for me as my sister, Hannah, navigates life with epilepsy. I invite you to join me in advancing the research that brings hope to families like mine."

“For more than 12 years, I’ve witnessed firsthand how epilepsy complicates even the best moments of Hannah’s life. I held her hand in the emergency room the night before our mom’s wedding after her rescue medications failed to stop a seizure. Our family beamed as she became a firefighter and Advanced EMT after a severe seizure-related injury delayed her career path. We spent hours on the phone discussing her dream of motherhood and the risks of starting a family while on antiseizure medication."

“Alongside each triumph, Hannah feels the weight of ‘what if’ on her shoulders – what if the medications stop working?; what if I have another seizure?; what if my dreams are interrupted?"

“With your year-end support, CURE Epilepsy funded research can reduce the ‘what ifs’ that so many families carry every day.”

Contribute to the future of epilepsy research here: https://bit.ly/3LfzQKd

12/26/2025

Born just after Christmas in 2018, Amaliyah was only 10 days old when her parents witnessed her first seizures. What followed was a year filled with endless questions, hospital stays, fear, and even a misdiagnosis.

Amaliyah was eventually diagnosed with SCN2A, a rare and complex genetic form of epilepsy. For her family, the diagnosis was a turning point that meant finally understanding the “why,” and it opened the door to proper treatment and hope.

With the right medication, a supportive school, and a village of people who believe in her, Amaliyah has been seizure-free since 2019. Today she is a thriving vibrant, joyful, bright little girl whose personality fills every room. Her story is a powerful reminder that epilepsy does not define a child. Resilience, love, and community do.

Her journey inspires us to keep pushing for earlier diagnoses, better treatments, and more research so families like hers never have to face these battles alone. 💜✨

Have an epilepsy story of your own? We'd love to hear it!

Share yours today: https://bit.ly/3Gs9F0c

12/24/2025

“I’ve had epilepsy since I was a baby…” That’s how Marie‑Claire's epilepsy story begins. She was diagnosed at just 18 months old. Her early seizures were dismissed as “nightmares,” but the reality was far more serious. Like so many people with epilepsy, she endured years of hospital visits, and even brain surgery at age 12.

But today she is seizure-free.

Marie-Claire is the first to tell us: the fight isn’t over. Because epilepsy doesn’t always disappear with the last seizure. It leaves uncertainty, questions, and a longing for acceptance, for understanding, for a cure.

If her journey teaches us anything, it’s this: epilepsy may test you, but it doesn’t define you. It takes hope to walk forward one day at a time. 💜

Have an epilepsy story of your own? We'd love to hear it!
Share yours today: 🔗 https://bit.ly/3Gs9F0c

12/23/2025

“If I could tell 9-year-old me that his epilepsy diagnosis doesn’t define him, I would do it. There’s always a light at the end of the tunnel, and there’s a million stars in every dark sky.” ✨

In 2014, Danny fled the devastation of war in Syria after his home was bombed. The next year when he was nine, Danny was diagnosed with epilepsy, and soon after, PTSD and anxiety.

What came next was years of uncertainty: MRIs, EEGs, daily medications, and the constant worry of another seizure. He missed most of sixth grade. He missed simple joys like biking and playing outside. He lost pieces of childhood that can never be replaced.

But Danny’s story didn’t end in the dark. With the support of his family and a dedicated medical team, his seizures are now under control and, nearly a decade later, he’s thriving.

Have an epilepsy story of your own? We'd love to hear it!
Share yours today 🔗: https://bit.ly/3Gs9F0c

12/22/2025

This is the first generation of scientists that can use the word “cure” without flinching…but they need help. Learn more from four-time grantee, Dr. Avtar Roopra:

“I entered the field of epilepsy research driven by one question: how can we prevent the development of this devastating disorder? The burden of seizures, the toll on families — it’s staggering."

“Over the past decade, four successive CURE Epilepsy grants have propelled my lab’s research at pivotal moments, supporting the development of preliminary data that helped me secure my first major federal award, an NIH R01 grant. That grant laid the foundation for deeper research and scientific discovery."

"However, just as we are accelerating towards the key next step of human clinical trials, federal funding uncertainty has put the brakes on our progress. Survival, not innovation, has become the norm. This is why CURE Epilepsy year-end donor support is more critical than ever."

“The kind of progress we are making doesn’t happen overnight. It takes years of dedicated research, consistent funding, and a steady pipeline of skilled scientists committed to the pursuit of a common goal."

"For advancements to continue, we must also invest in the future of this field by nurturing early-career scientists like my colleague, Dr. Olivia Hoffman. Her generation of researchers has the potential to find the cures for epilepsies, but only if we can keep them in our labs. Your support today ensures promising scientists like Olivia stay in this fight and keep pushing discovery forward.”

Contribute to the future of epilepsy research here: https://give.cureepilepsy.org/campaign/713010/donate?c_src=facebook&c_src2=avtar

12/17/2025

Our latest episode of Epilepsy Explained features Dr. Melanie McNally, Neonatal Neurologist and Epileptologist at Massachusetts General Hospital Brigham, who breaks down the essential information every parent should know about infantile spasms, a medical emergency that can affect infants in their first year of life.

Dr. McNally discusses how to recognize the subtle but critical symptoms, the importance of rapid evaluation and treatment, and what steps families can take if they are concerned about their baby’s movements or development.

Learn more: https://bit.ly/3XRbWrd

12/11/2025

A new UK-wide epilepsy trial is offering hope to families by using a small brain implant that tracks seizures more accurately than traditional methods.

For 22-year-old Adam Atkinson, the implant has already revealed seizures happening in his sleep—information his care team never had before.
Researchers say this technology could lead to more individualized treatment and a deeper understanding of drug-resistant epilepsy.

For Adam’s family, it’s a sign that progress is happening: “This just gives you a little bit of hope.” 💜✨

Learn more:

Adam Atkinson has an implant in his brain which is tracking the seizures he experiences.

12/09/2025

Team CURE Epilepsy runner Nicole has a story to tell and a question to ask:

“This past October, I crossed the finish line of the Chicago Marathon, something doctors had told me I would never be able to do because of my epilepsy. As a part of my training, I ran five days a week for two and a half years. My training was never perfect due to fatigue and the side effects of daily medications, but I kept faith and crossed the finish line."

“I ran to prove that epilepsy is a part of me, but it doesn’t define me. I ran for the millions of people still living with uncontrolled seizures. And I ran to raise awareness and support for an organization that’s incredibly close to my heart: CURE Epilepsy."

“I’ve had epilepsy since I was 9 years old. I’m 40 now, and I still take daily medications, still face seizures, and still deal with side effects and limits. But I will never stop fighting, and I will never stop believing that a cure is possible."

“That’s why I’m sharing my story today."

“CURE Epilepsy is the only nonprofit singularly focused on funding the research that could one day lead to a cure, and they need your help."

“Will you make a year-end gift and advance breakthrough research, better treatments, and ultimately, freedom from seizures?”

Give now here: https://bit.ly/4pYfaFt

12/05/2025

FACT: Every 12 minutes, a baby is diagnosed with IS worldwide. Don’t wait—if you notice these signs in your baby, seek medical attention now! 💙 Learn more and recognize the signs to protect your child’s brain. Learn more at infantilespasms.org.