CURE Epilepsy

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CURE Epilepsy

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

CURE Epilepsy's mission is to fund breakthrough research that will transform the lives of people living with epilepsy as we lead the search for a cure. We are the leading nongovernmental agency fully committed to funding research in epilepsy. CURE Epilepsy has been at the forefront of epilepsy research, raising more than $90 million to fund innovative research and other initiatives that will lead

the way to a cure for epilepsy. CURE Epilepsy funds grants for young and established investigators and has awarded more than 285 cutting-edge projects around the world to date.

24/07/2025

Jason was mid-conversation with his wife when the world suddenly turned gold, and everything changed. What started as a confusing moment in 2010 became the beginning of a life shaped by epilepsy, determination, and perseverance.

A father of five and a nurse for 25 years, Jason faced his diagnosis head-on. From hospital tests to career changes to medication trials, life was flipped upside down almost overnight. He quickly learned that epilepsy doesn’t just impact health, it touches every part of life.

There were setbacks, like seizures in his sleep and even a terrifying five-day memory gap that led to hospitalization. But there were also turning points. With support, expert care, and a deep commitment to his well-being, Jason found a way forward.

Today, Jason's seizures are well-managed, his perspective is clear, and he’s choosing to share his story, not because it’s over, but because someone else might just be starting theirs.

📣 Have a story of your own? We’d love to share it.

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

24/07/2025

This month's epilepsy research news round-up includes two studies:

🤰 High blood pressure in pregnancy linked to increased risk of seizure in children: https://bit.ly/4nOE1et

🧬Comprehensive Study Maps Genetic Mutations in SLC13A5 Linked to Epilepsy: https://bit.ly/4eR3SOQ

Never miss an update! Subscribe to have this news delivered straight to your inbox: https://bit.ly/4lzKjxf

24/07/2025

Make every step count! 🏃‍♀️✨ Join us on August 24 at Ella’s Race to CURE Epilepsy — a 2.6-mile fun run (or 1-mile walk) celebrating the unstoppable spirit of Ella Cunneen and supporting critical epilepsy research. 🔬

🎉 Enjoy a morning filled with music, treats, and joyful community vibes!
👕 Score a free 10th Anniversary t-shirt with registration.
👟 The 2.6-mile distance reflects the 1 in 26 people who will develop epilepsy — every step makes a difference.

📍 La Grange Park, IL | 10 AM – 12 PM | $25

🔗 Sign up now! https://bit.ly/3SoQqYg

23/07/2025

🧬 July 23rd is v‑ATPase Awareness Day! 💙

Join us in honoring families impacted by v‑ATPase-related genetic disorders — families like Anny’s. After experiencing a six-minute seizure at just five months old, Anny was diagnosed with a mutation in the ATP6V0A gene—one of several genes affected by v‑ATPase dysfunction.

Following her diagnosis, Anny and her family connected with others affected by v‑ATPase-related disorders, finding community and support in the shared pursuit of answers and research.

Anny’s story is a powerful reminder of the importance of early diagnosis, continued scientific discovery, and the strength of families facing the unknown. Thank you to Anny's family and v-ATPase Alliance for sharing this story.

🔗 Read Anny's full story today: https://bit.ly/45jp0di

18/07/2025

Since 1950, the National Institute of Neurological Disorders and Stroke - NINDS has played a pivotal role in unraveling the complexities of the brain and nervous system through…

🔬 Groundbreaking research
🧠 Training the next generation of scientists
🤝 Working closely with people with lived experience
⚡ Improving diagnosis, treatments, and prevention strategies

NINDS continues to lead the way in neuroscience discoveries. Many CURE Epilepsy grantees go on to receive NINDS funding to further their lines of research, and we are grateful for the advances towards cures that continue to come out of those investments.

16/07/2025

Emily was just 16 when she had her first seizure during a virtual class. It was unexpected and life-changing, but it was also the beginning of an incredible journey of strength, growth, and finding her voice.

After being diagnosed with drug-resistant epilepsy, Emily faced challenges that are all-too-familiar in the epilepsy community, like hospital stays, medications, and even brain surgery to implant an RNS device. But Emily found power in sharing her story and reminding others that they’re never alone.

From having seizures in class to joking with friends about black eyes from "bear fights," she showed that humor, courage, and hope can be strengthened by struggle. Today, Emily is graduating from The Ohio State University with degrees in neuroscience and psychology! 🥳🎓

She dreams of a world with a cure — one filled with freedom, peace, and possibility for everyone on this journey.

✍️ 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

14/07/2025

We are thrilled to share that we will honor Senator Dick Durbin (D-IL) with our Founders Award at this year's Night of Discovery benefit on September 20! This award is in recognition of his advocacy for epilepsy research - and biomedical research more generally - over his long and celebrated career. Senator Durbin was instrumental in establishing the Epilepsy Research Program within the Department of Defense and continues to champion robust funding for the National Institutes of Health (NIH) and other key health agencies.

Join us for what promises to be an unforgettable evening! Get tickets or sponsorships here: https://e.givesmart.com/events/H1K/

08/07/2025

🌟 Mark your calendars! ❤️ Our amazing CURE Epilepsy Champions are hosting events and fundraisers that raise awareness and fuel research—and YOU can be part of them. Attend an event, donate to a fundraiser, or cheer them on in the comments!

🏞️ Keith Myrmel’s 100-Mile Trek – Along the Pacific Crest Trail Fundraiser, honoring his grandson, Luca
🏃‍♀️ Ella’s Race to CURE Epilepsy 2025 – August 24, La Grange, IL
⛳ Scramble For A Cure: Golf Tournament – September 12, Papillion, NE
👟 4th Annual Reagan’s Run – September 21, Wayne, PA

Every step, swing, and gift brings us closer to a cure. 💜

07/07/2025

Do you or a loved one experience epileptic seizures that last longer than 3 minutes? The STARS Study is a global clinical research study testing an investigational inhaler that may help stop a prolonged seizure after it starts.

Researchers are seeking participants who:
👤 Are 12 years or older
🧠 Have focal or generalized epilepsy, or a combination of the two
⏱️Have had 2 or more prolonged seizures in the past 3 months
🤝Have an adult who can act as a study partner to assist you throughout the study

The study aims to enroll up to 250 participants at sites across the U.S., Europe, Asia, and Australia.

💡 You could help advance epilepsy research and potentially benefit from a new treatment approach. Learn more about the STARS Study from UCB here: https://www.starsepilepsystudy.com/

03/07/2025

When Cooper had his first seizure at 19, his life changed — but not in all the ways he expected. His mom, a nurse, recognized something was wrong just in time and got him to safety. She kept him breathing through a six-minute tonic clonic seizure.

Ten years later, Cooper has built a life full of purpose and strength. His epilepsy doesn’t define him — but it has shaped how he approaches life: with mindfulness, responsibility, and a deep appreciation for every win, big or small.

Like many in the epilepsy community, Cooper still doesn’t know why the seizures started. His tests have all come back with more questions than answers. But thanks to a treatment that works for him, a strong support network, and his own determination, he’s living a full and joyful life.

He’s gone through school, built a career, and gotten married. Yes, he has to think twice before traveling or skipping a dose. He avoids certain activities, just to stay safe. But what stands out most is how he’s adapted — and how much strength and awareness he’s gained in the process.

A cure for Cooper would mean even more freedom: more adventures, fewer limitations, and peace of mind for the future.

✍️ 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

02/07/2025

🔬 Cuts to federal funding and staffing at HHS put groundbreaking epilepsy research at risk. We have to protect this progress for the individuals and families who have yet to find seizure freedom.

📢 Your story can help protect the future of biomedical research.

CURE Epilepsy is gathering stories from our community to share with Congress and the public. We're looking for:
🔬 People living with epilepsy who have participated in clinical trials or benefited from research
👨🏿‍👩🏻‍👧🏼‍👦🏽 Caregivers and family members who’ve witnessed life-changing breakthroughs help a loved one
🩺 Health professionals, researchers, and advocates who understand the urgency of sustained investment

🔗 Share your story: https://bit.ly/3TjyY80

25/06/2025

CURE Epilepsy Champions James (aka Westy) and Caspar are running the Gobi Desert ultramarathon — the equivalent of six marathons in six days — to raise funds for epilepsy research. They're a little more than halfway through and not slowing down!

Westy's eldest daughter, Arta, was diagnosed with epilepsy just before her third birthday in 2020. The initial weeks were incredibly difficult, as they struggled to control her seizures. Some days, she experienced up to 20 complex partial seizures, each one leaving her exhausted and her parents feeling helpless.

The pair has raised $144,000 of their $150,000 goal! 🙌👟💜 Drop them a note of support in the comments or give to get them over the finish line! https://give.cureepilepsy.org/fundraiser/6376874

Photos by Racing the Planet.

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