CURE Epilepsy

In the face of an uncertain, unpredictable landscape, our promise to you is that we will continue to relentlessly support epilepsy research until we live in a seizure-free world. Together with you, the dedicated CURE Epilepsy community, we will drive science forward.

What happens when underrepresented populations, like women, are included in medical research? Care improves for everyone — including future generations. The Maternal Outcomes and Neurodevelopmental Effects of Antiepileptic Drugs (MONEAD) study is a good example, studying the intersection between epilepsy care and reproductive health. This prospective observation study examined the impact of epilepsy and antiseizure medications on pregnancy and the neurodevelopment of exposed children. There were many important findings from this study, including that neurodevelopmental outcomes in children exposed to antiseizure medications did not differ from that of control children. This study also found that pregnant people may need higher doses of certain antiseizure medications during pregnancy. Learn more about how epilepsy impacts women and the need to close the gender knowledge gap on our website here: https://bit.ly/3Do0AEG

Quick update on progress from Rare Epilepsy Partnership Awardee Dr. Dirckx!

YOUR VOICE IS URGENTLY NEEDED ?? Lawmakers could vote as early as tomorrow to cut the Congressionally Directed Medical Research Programs (CDMRP) funding by 57%. The Department of Defense's Epilepsy Research Program (ERP) is part of the CDMRP and will be directly impacted by these cuts. The progress we have made in traumatic brain injury and post-traumatic epilepsy research for veterans and others with acquired epilepsy has come thanks to key funding from the ERP. SAVE THIS POST! Below, please find a script you can use to call or email your representatives to urge them to protect ERP funding. Here is a link you can use to find your representatives: https://lnkd.in/e9R7-Dm

Women and people assigned female at birth have historically been been underrepresented in medical research, including epilepsy studies. For many years, clinical trials primarily focused on men and people assigned male at birth (AMAB), with the assumption that findings would apply equally. This assumption overlooked key differences in how conditions like epilepsy can be influenced by hormones, contraception, pregnancy, and menopause. Without dedicated research on women, critical gaps remain in understanding and treating epilepsy. Now we know that women with epilepsy face unique challenges and may need to have certain conversations with their care team as they age. To help get the conversation started, we've created this short, downloadable guide of questions women may want to ask their doctors around family planning, pregnancy, bone health, and more.

We are proud to partner with the Anita Kaufman Foundation for the Purple Day? Expo 2025 next week in Orlando! This family-friendly event is intended to raise awareness of epilepsy and support those affected by it. In addition to the exciting lineup of inspiring speakers and special activities, attendees will have the opportunity to learn more about the latest developments in epilepsy research at the CURE Epilepsy booth. Plus, attendees will receive a first glimpse at the CURE Epilepsy Community Enrichment Program spotlight video featuring our 2024 intern, Channing Seideman from Cincinnati, OH. This program, piloted in partnership with UCB, provides individuals with epilepsy with paid work experience to develop their professional skills. See you in Orlando! ??

International Women with Epilepsy Day highlights the challenges this group faces and the need for more inclusive research. We’re proud to offer resources and info about how hormones, family planning, pregnancy, and menopause impact epilepsy management: https://bit.ly/4ihGTwN

#Epilepsy is common in people with v-ATPase. While our group funds research to better understand v-ATPase, organizations like CURE Epilepsy are doing the same to better understand the causes and treatment of epilepsy. Rare genetic epilepsy is a priority research area for CURE Epilepsy and together we are part of the Rare Epilepsy Network. Today we want to introduce you to this lovely lady with her story told by her mom, Cindy. "Anny, a joyful child with unique toes and a quirky laugh, a ray of sunshine in our life. From her earliest days, we noticed things weren't quite lining up - a little behind with her milestones, her teeth were fragile, her muscles were weak and a tiny appetite that could test the patience of a saint, such a picky eater. Then came May 2. A night that etched itself into our hearts. Anny, barely warm with a temperature of 38.5C (101F), suddenly seized. It wasn't just a shiver or a shake; it was a full-blown storm. Six minutes that felt like an eternity. Her face turned a shade of blue that I never want to see again, her eyes rolled back, and she fought for every breath. Panic choked me. We called emergency services and the hospital became our temporary home. Those hospital days were a blue of fear and flashing lights. More seizures. More questions. But amidst the chaos, a tiny seed of hope was planted. Those seizures, as terrifying as they were, became a turning point. They were the key that unlocked the door to answers, the path that led us, finally, to the diagnosis of ATP6VA. Now we knew what we were fighting and we found v-ATPase Alliance, the only organization in the world whose mission is to help Anny and all other kids affected in v-ATPase genes." The story can be found at https://lnkd.in/dJ48ruqm Get to know her story and others! #CareAboutRare #RareDiseaseDay

In 2010, Dr. Mingshan Xue’s meeting with Caroline DeLuca, who had frequent seizures from a rare STXBP1 mutation, inspired him to launch a side project on the condition when he established his lab in 2014. Ten years later that humble side project, with the help of funding from CURE Epilepsy, has developed into a potential curative treatment on the cusp of human clinical trials. Xue is now partnering with Capsida, a biotech company, to develop a gene therapy, CAP-002, that will supplement STXBP1 protein in the brain. On Rare Disease Day, we're highlighting Dr. Xue's work as a testament to the power of research. Progress thrives when curiosity is rewarded and organizations come together to better understand rare conditions that were once thought impossible to treat. Learn more about his work in this CURE Epilepsy Discovery: https://bit.ly/3QEkpuc

Our monthly Epilepsy Research News update included articles and abstracts about: ???????? Childhood Epilepsy May Predispose People to Memory Disorders Later in Life ?? Stem Cell Therapy Jumpstarts Brain Recovery After Stroke ?? New Research Reveals Potential Biomarkers for Epilepsy Diagnosis ???? Scientists are Unraveling the Cause Behind Sudden Unexpected Death in Epilepsy Check out summaries of these articles on our website here: https://lnkd.in/g3H6RZ6R Don't want to miss an update? Subscribe here: https://lnkd.in/gMjhUAYV