This month I would like to highlight an editorial authored by myself and several colleagues discussing the critical needs for epilepsy research identified during the 2021 Curing the Epilepsies Conference. These needs include integrating epilepsy care and research and reducing health disparities for underserved communities. Key to these transformative changes is the development of a National Plan that would accelerate the goal of improving quality of life and developing cures for every person touched by epilepsy.
Next, we report the work of several CURE Epilepsy grantees and members of CURE Epilepsy’s Post-Traumatic Epilepsy Initiative. This publication, authored by Dr. Annamaria Vezzani, Dr. Teresa Ravizza, Rossella Di Sapia, and colleagues, investigates the role of microglia, a type of “immune” cell for the brain, in acquired epilepsy. This research suggests that interfering with the increase in microglia that is associated with acquired epilepsy may improve epilepsy outcomes.
We also feature an editorial from David Axelrod, husband of CURE Epilepsy founder Susan Axelrod, in which he writes that his daughter Lauren “faces another battle, not with epilepsy or the toll it’s taken, but with policy changes that could deny her and others with intellectual disabilities the life they choose in concert with their families and loved ones.”
This month’s news also features the development of new molecules from resin with promising properties as possible drugs against epilepsy. Researchers found that these molecules had an antiseizure effect in zebrafish larvae.
Summaries of these research discoveries and more can be found below.
- Advancing Research Toward Epilepsy Cures: A new publication reviews outcomes from the 2021 Curing the Epilepsies Conference, which brought together patient advocacy organizations including CURE Epilepsy, researchers, and clinicians to discuss priorities that could significantly advance research toward cures and improved health outcomes for people with epilepsy. Critical needs for advancing epilepsy research include integrating epilepsy care and research, reducing health disparities for underserved communities and improving measurement and tracking of patient outcomes. The authors report that key to driving these transformative priorities is the development of a National Plan that would put the nation on a path to developing cures and improving the quality of life for every person touched by epilepsy. Learn more
- Understanding Acquired Epilepsy: Researchers have found a way in which an increase in microglia (a type of immune cell for the brain) plays a role in different ‘phases’ of epilepsy. Using an animal model of acquired epilepsy, the researchers found that an increase in microglia during the early phases of epilepsy development contributes to degeneration of neurons in the brain, whereas increases in microglia after the development of epilepsy contributes to seizures. The authors suggest that interfering with increases in microglia may offer a potential target for improving acquired epilepsy. Learn more
- Opinion Piece: When It Comes to People Like My Daughter, One Size Does Not Fit All: By David Axelrod. My daughter, Lauren, turned 40 last month. She is happy and healthy. And that is nothing short of a miracle. Today, Lauren faces another battle, not with epilepsy or the toll it’s taken, but with policy changes that could deny her and others with intellectual disabilities the life they choose in concert with their families and loved ones. The issue is federal Medicaid funding to states, which helps underwrite residential facilities for people with intellectual disabilities, and the conviction of some advocates and policymakers that larger settings like Misericordia, where Lauren lives, should be discouraged. Learn more
- “Big Data” to Improve Pediatric Seizure Control: Researchers have demonstrated how to use standardized reporting of clinical data for seizures, providing fundamental information to determine what methods work best for keeping seizures under control. To help standardize how clinical data is recorded at epilepsy visits, the team of researchers began using common data elements (standardized key information that can be collected across studies) to ensure that relevant data is captured in a comparable way across studies and clinical visits. The study provides fundamental data that will serve as the foundation for treating individuals with epilepsy to achieve the best patient-centered outcomes possible. Learn more.
- New Drug from Resin to Combat Epileptic Seizures: Researchers have developed new molecules with promising properties to become possible drugs against epilepsy. This research centers around a potassium ion channel found in the brain that plays an important role in epilepsy. The researchers have shown that several of the new resin acid molecules can open the channel and produce an antiseizure effect in zebrafish larvae. The scientists are now continuing to work towards a detailed understanding of how the resin acid molecules affect ion channels, and how they can be improved and developed as drugs. Learn more