CURE Epilepsy

09/29/2025

At just 8 years old, Bianca's life took an unexpected turn when she was diagnosed with a brain tumor in her left frontal lobe. What began as frequent headaches escalated into a life-altering moment when her mother found her having a tonic clonic seizure. A CT scan revealed the tumor, which was safely removed, leading to a period of seizure-free living for 20 months. However, the battle was far from over.

Soon after, Bianca was diagnosed with drug-resistant epilepsy. She underwent epilepsy surgery, achieving nearly a decade of seizure freedom. But the seizures returned, this time daily and resistant to medication. In pursuit of a solution, she underwent a stereo-EEG, which provided a four-week relief. Despite these challenges, Bianca's spirit remained unbroken, and she continued to fight for a better quality of life.

Throughout her journey, Bianca and her family faced numerous obstacles, including overwhelming medical appointments, hospital visits, and the emotional toll of living with a chronic condition. Yet, they found strength in each other and in their commitment to raising awareness about epilepsy. Bianca's story is a testament to resilience, hope, and the power of community.

📖 Have a story of your own? We'd love to hear it!

🔗 Share your story today: https://bit.ly/3Gs9F0c

09/26/2025

For 30+ years, Lisa and Randy Siegel have built a loving life for their daughter, Becca, a bright, compassionate woman who adores writing to pen pals and befriends every dog she meets. But epilepsy has shaped their every day. Becca experiences daily seizures, and her parents walk arm-in-arm with her at all times, always fearing the next drop seizure.

Their journey has been filled with hospital visits, over 30 medications, and countless unknowns, but also with unwavering hope. People like the Siegels remind us that research isn’t just data—it’s real lives, real courage, real urgency. Because every donation, every voice, every moment of awareness moves us a little closer to giving Becca and so many others a chance for more seizure relief, more independence, more joy.

✨ “There’s real momentum in science right now,” Randy says. “We’re closer. But we have to keep going.”

🙏 Becca’s story is one of love, resilience, and belief in a better tomorrow. Read more: https://bit.ly/4nIXhtf

09/25/2025

Mark your calendar! 📆 Next Tuesday, 9/30 is UNITE to CURE Epilepsy, our annual day of community, solidarity, and giving. During UNITE, you’ll meet Dr. Rachel June Smith and the budding scientists working in her lab. Not only will you learn about the breakthrough epilepsy research happening there every day, but also about the big ambitions the early career investigators have. They have big, bold ideas, and we can’t wait to share them!

Here’s how you can support scientific advancement during UNITE to CURE Epilepsy:
💜 Donate early and encourage friends and family to do the same
📲 Share our posts to your social media community
🤝 Start a Facebook or Instagram fundraiser

Get the ball rolling by making a gift today, which will be matched dollar-for-dollar by the Brackenridge families: https://bit.ly/4gPbMcz

09/24/2025

National Postdoctoral Appreciation Week 2025 wrapped up last week, and we are proud to highlight the work of postdoctoral researchers like Dr. Olivia Hoffman. In this clip from Seizing Life, Dr. Hoffman discusses her epilepsy research and what inspires her commitment to making a difference. 🧠

To all postdocs: your dedication drives innovation, discovery, and hope. Thank you! 💜

09/23/2025

This year's Night of Discovery was also a night to remember. 🔬✨ Last week CURE Epilepsy supporters, researchers, and dear friends gathered in Chicago to champion epilepsy research and celebrate the progress we've made.

Before the program kicked off, members of Dr. Avtar Roopra's lab at the University of Wisconsin Madison set up a mini science fair to walk guests through the groundbreaking science that is informing their work on acquired epilepsy.

ABC Chicago's Tanja Babich led us through a spectacular program, sharing about her family's personal experience with chronic illness. Senator Dick Durbin received our 2025 Founders Award for his fierce advocacy of federally-funded medical research, including launching the Epilepsy Research Program within the Department of Defense. We thank him for his passion and commitment to creating a future where all Americans with epilepsy have the opportunity to thrive.

Dr. Roopra joined us on stage to talk about how his work has the potential to be the first disease modifying therapy for epilepsy - and how changes to the federal research funding landscape has put this work in jeopardy. Retired Marine Corps Captain Jack Somers, who has been battling post-traumatic epilepsy spoke to us about what a cure would mean for him and his family.

Thank you to everyone who attended and supported this year's Night of Discovery, helping us raise over $1.5 million for the next wave of epilepsy science! Your unwavering support inspires us and fuels our mission. 💜

09/18/2025

What's the latest with the NIH budget? 👇

The House Appropriations Labor-HHS Subcommittee recently advanced a bill that would modestly increase NIH’s budget to $46.9B for FY26, a big deal after earlier proposals aimed to cut funding by nearly 40%. This could mean continued support for critical research, including epilepsy.

But we’re not there yet: The full House still has to pass the bill, and negotiations with the Senate are coming. A temporary budget via a continuing resolution (CR) might be needed to avoid a government shutdown on Sept. 30.

09/17/2025

🐾 Ever wonder how service dogs can sense a seizure before it happens?

Check out our latest webinar featuring Jennifer Arnold of Canine Assistants and epilepsy advocate Channing Seideman. They dive into the real science behind seizure-alert dogs and how these loyal companions provide more than just support — they can be lifesaving. ❤️

🎥 Watch it here:

Review of the two types of epilepsy service dogs (seizure alert dogs and seizure rescue dogs) and the process of getting one.

09/16/2025

You really made a big impact this past year! Our community of supporters powered some great things over the last year…

💜 $5.2 million invested in program investments
🔬 30 grants under active management
📖 2 scientific publications accepted by our CURE Epilepsy staff
🎗️ 28 Champion events held across the nation, fueling awareness and epilepsy research funding

None of this would be possible without our amazing community. By funding cutting-edge research, driving real-world change.

🙌 THANK YOU for standing with us!

09/16/2025

Diagnosed with drug-resistant epilepsy at just 3 years old, he faced frequent seizure clusters and developmental delays, making everyday milestones a fight. Despite these challenges, Kellen’s bright smile and joyful spirit never faded. His family’s love and determination became a source of strength and hope. ❤️

Kellen’s story is one of resilience through therapy, medication changes, and ongoing care, he continues to grow and make progress. Every small victory, from learning new words to taking steps, is a reminder that hope can shine even in the hardest times. ✨

Today, Kellen lights up every room he enters with his laughter and curiosity. His family dreams of a future where seizures no longer hold him back, filled with freedom, discovery, and endless possibilities.

If you have a story like Kellen’s, we want to hear it! 📣

🔗 Share your story today: https://bit.ly/3Gs9F0c

09/11/2025

Are you a caregiver for a child with infantile spasms?

MedPanel, an independent healthcare research agency, is conducting a paid study to better understand your experience and improve support programs for families like yours.

✅ What’s involved?
• 45-minute Zoom interview + 15-minute pre-survey
• $130 for your time
• Completely confidential and anonymous

📍 U.S.-based caregivers only
💡 Your story can help shape better treatment journeys for children prescribed vigabatrin.

👉 Check if you qualify:
https://s.alchemer.com/s3/4467f7f80399?org_id=IF5

Questions? Contact Pallavee Kapoor at pallavee.kapoor@medpanel.com

Infantile Spasm Disease CAREGIVER Study.

09/10/2025

Hollie was just 14 when she experienced what she thought was a strange dream. But what started as brief, nighttime episodes soon became more frequent and intense. After months of keeping it to herself, she finally told her parents and by the time she turned 15, she was diagnosed with a rare neurological disorder: Periventricular Nodular Heterotopia.

From there, Hollie’s journey became one of incredible strength: more than 14 medications that didn’t work and a diagnosis of drug-resistant epilepsy.

But Hollie never gave up. In 2024, she underwent laser ablation surgery, had a vagus nerve stimulator implanted, and finally found a treatment plan that made a difference. Now 19, Hollie is thriving in college, studying science, and planning to become a neurointensive care nurse so she can help others like her! 🎓🎉

To Hollie, a cure would mean being able to live freely again. It would mean peace of mind, independence, and the ability to live without limits.

Her journey is a powerful reminder that there is always a path forward. ✨

✍️ Have a story of your own? We’d love to hear it. Sharing your experience can inspire and empower others living with epilepsy.
📣 Tell your story here: https://bit.ly/3Gs9F0c

09/08/2025

Check out these two CURE Epilepsy Champion events happening in September!

⛳ Team Fidelity – Scramble for a Cure
Honoring three epilepsy warriors, Adelaide, Lola, and Lucy, Team Fidelity is raising awareness for the 1 in 26 people impacted by epilepsy and the urgent need for a cure.
Papillion, NE

👟 Reagan’s Run
Reagan began her epilepsy journey at just 16 months old. Now over a decade later, she continues to inspire by hosting her fourth annual run and has raised over $70,000 for epilepsy research!
Wayne, PA

You can learn more about these events on our website. If you'd like to set up your own event to fund research and raise awareness about epilepsy, consider becoming a CURE Epilepsy Champion! 🔗 https://bit.ly/4geUDJ6