CURE Epilepsy

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.

12/04/2025

This month on Seizing Life, we’re joined by Lauren Aguirre and Dr. Elizabeth Thiele, authors of Epilepsy for Dummies. This book is a much needed, reliable guide for anyone navigating epilepsy, blending Lauren’s lived experience as a patient and parent with Dr. Thiele’s deep clinical expertise, offering clear, trustworthy answers in a time of overwhelming online information.

In this episode, they share how they organized the essential topics of explaining, diagnosing, treating, and living with epilepsy, and what they hope patients, caregivers, and providers will take away from it. Their combined perspectives make this guide a true must-have for anyone at any stage of the epilepsy journey.

🎙️ Tune in now! https://bit.ly/4rCuM2O

Massachusetts General Hospital, MGH Pediatric Epilepsy Program

12/03/2025

When a baby shows sudden head drops, body-crunch movements or wide-eyed blinks, it might not be “just baby behavior” — it could be infantile spasms. These seizures are rare but serious. Without prompt diagnosis and treatment, they can lead to developmental delays and brain damage.

This December (Dec 1–7), during Infantile Spasms Awareness Week, take a moment to learn the signs — and share this post. Because when it comes to a baby’s brain, every second matters.

12/02/2025

A special message from little Kora:

"Hi! I’m Kora. I’m six-and-a-half, a big sister, and I have epilepsy."

"I don’t like epilepsy. It makes my body do weird things. Sometimes my arm moves a lot or I fall over. Sometimes I wake up and I hurt, because I have seizures at night."

"Because of epilepsy, I have to be careful all the time. I do school at home. I can’t always go to birthday parties. I can’t even go on the swings all by myself. And I have to take medicine that makes me feel yucky."

"If there was a cure, I could go to sleepovers and play with my friends. I could run around and be silly and not have to stop because of a seizure. I could just be me."

"My mom says the people at CURE Epilepsy are working hard to make it so no one has seizures anymore. That’s why we bake cookies every year to raise money for them. Will you help them today? Even a little bit matters. 💜"

Make your Giving Tuesday gift here: https://bit.ly/4pu3NEY

12/01/2025

Parents know best. If your baby’s movements seem unusual, don’t wait, record what you see and ask your doctor about infantile spasms. Early treatment can prevent lifelong challenges. Learn more at the link in our bio.

11/28/2025

Seany’s Shuffle 2025 was a huge win! Families, friends, and community rallied together on a beautiful day in Lakewood Ranch, Florida to run, walk, and raise more than $33,000 while supporting the Rabus family. Every step brought us closer to funding life-changing research. To cap it off, runners and walkers cooled off with refreshing freezy pops to enjoy the rest of their day. Thank you to all for showing up and showing out! 👏

Thank you to Seany, who lives bravely with epilepsy, his family for inspiring us, and his friends for coming together to make a real impact.

11/26/2025

Childhood absence epilepsy (CAE) often appears as brief staring spells that can be easy to miss. In our new Epilepsy Explained episode, Dr. Zachary Grinspan, Director of Pediatric Epilepsy Research at Weill Cornell Medicine, breaks down what CAE looks like, how it’s diagnosed with EEG, and what treatments can help children regain control of their seizures. He also discusses common challenges, like attention issues and what families can expect as children grow including the encouraging news that many kids outgrow CAE in their teen years.

If your child has CAE or you’re concerned about absence seizures, this episode offers clear, compassionate guidance to help you better understand and navigate the journey.

📽️ Tune in now and learn more about childhood absence epilepsy: https://bit.ly/4oUNKjK

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.