Highlights from the 2024 AES Annual Meeting

In December, our team attended the 2024 American Epilepsy Society (AES) Annual Meeting in Los Angeles. This conference gives epilepsy experts and advocates a chance to share research and innovations to improve care for families like yours.

It’s also a reminder of why we do what we do. We want to make sure that all families facing drug-resistant epilepsy have the information and support they need.

Here are my key takeaways from the meeting:

Reducing Risks in Epilepsy

At the Partners Against Mortality in Epilepsy (PAME) meeting, families, advocates, and experts discussed the serious risks of epilepsy, including:

• SUDEP (Sudden Unexpected Death in Epilepsy)
• Status epilepticus (prolonged seizures)
• Injuries from seizures
• Co-occurring health issues
• Mental health challenges like depression and suicide

Families shared heartbreaking stories of loss—often because they weren’t aware of these risks or life-saving options like epilepsy surgery.

Drug-Resistant Epilepsy: A Hidden Danger

Dr. Sandi Lam, Division Chief of Neurosurgery Lurie Children’s Hospital in Chicago (and PESA Board Member), discussed how surgical treatments can transform lives.

Prevalence and Risks

• 1 in 3 epilepsy patients has drug-resistant epilepsy (DRE), meaning seizures don’t stop even after trying two or more medications. (Kwan, 2010). The chances of achieving seizure freedom decrease significantly with each additional medication tried.
• Children with DRE face 7 times higher mortality rates compared to the general population.
• The risk of SUDEP alone is estimated at 1 in 833 per year (Ryvlin et al., 2019).

The most common risk factors for SUDEP are high seizure frequency, early age of seizure onset, and multiple antiseizure drugs (Abdel-Mannan et al., 2019).

Knowledge Gap

• Ongoing seizures can hurt brain development. This is due to seizure activity and medication side effects.
• There is an increased risk of death from epilepsy-related causes.
• Children with DRE face higher risks, including developmental delays and regression of milestones. (Cross et al., 2006; Samanta et al., 2021)

Surgical Treatment: A Game-Changer for Many

Surgery can be life-changing for children with drug-resistant epilepsy

Dr. Lam shared her study of 18,000 children treated at 49 U.S. pediatric hospitals, which showed that epilepsy surgery significantly improves survival. Over 98% of children who had surgery were alive after 10 years, compared to 89% of those treated with medications alone. (You can read this important study here.)

• Cranial epilepsy surgery, which removes or disconnects the part of the brain causing seizures, reduced the risk of death by 83%.
• Vagus Nerve Stimulation (VNS), a device implanted under the skin to send electrical signals to the brain, reduced the risk of death by 35%.

This highlights the importance of looking at all possible options. In fact, surgery may offer the best long-term survival for the right patients. (Suresh & Ibrahim 2023)

Advances in Techniques

There’s a role for surgery when it can be performed safely and effectively. Decades of research show that we can do this safely in children (Pan et al., 2020). An international consortium showed that even infants up to three months of age have good outcomes and safety profiles (Roth et al., 2021). Surgical innovations, including minimally invasive procedures, deep brain stimulation, and responsive neurostimulation, have expanded options even for patients previously deemed ineligible.

Barriers to Surgery and Equity in Care

Despite its potential, epilepsy surgery is underutilized.

• Only 1 in 3 patients who could benefit from surgery receive it. (The Connecticut Study of Epilepsy; Baca et al., 2013).
• Families often wait years, sometimes decades, for a referral to epilepsy surgery despite its proven benefits.
• Many families face delays in getting surgery due to race, gender, or insurance (Rubinger et al., 2016; Sanchez Fernandez et al., 2017; Jackson et al., 2020; Armour et al., 2021).

Call to Action: Knowledge is Power

Dr. Lam’s research shows that poorly controlled epilepsy is dangerous. Families need to know about all of the risks and treatment options to make the best decisions for their loved ones.

Every patient with drug-resistant epilepsy should be offered a surgical evaluation to learn how to reduce seizures, improve brain health, and save lives.

Promising Research in Genetic Therapies

Dr. Heather Mefford is part of a team of doctors and researchers at St. Jude Children’s Research Hospital. Her team is working to understand patients with severe early-onset epilepsies better. These patients don’t have good treatment options, and their seizures continue despite trying many anti-seizure medications.

She reminded us that genetic testing is now available and informative for any patient with epilepsy (You can read the important research about this here: Chourasia et al., 2024; Macdonald-Laurs et al., 2024; Marquez et al., 2024).

Dr. Mefford shared some of the exciting advances in therapies for epilepsy:

• Antisense Oligonucleotide (ASO) Therapy for genetic epilepsy syndromes:
  • The MONARCH Study by Stoke Therapeutics showed improvements in seizure reduction and cognition in Dravet Syndrome (and now approved for a phase 3 trial) (Han et al., 2020; Yuan et al., 2024).
  • The EMBRAVE Study by Praxis Medicines for children with early-onset SCN2A Developmental and Epileptic Encephalopathies (DEE) completed a Phase 1 clinical trial with promising results—several SCN2A patients who received the treatment show that it will be effective for seizures.
• Gene therapy trials target specific genetic mutations for long-term seizure control. This approach involves turning genes on or off or fixing genetic mutations contributing to epilepsy. Using advanced tools, scientists can directly target the genes responsible for seizures, opening possibilities for long-term control or even a cure. (Chen et al., 2024; Zhang and Wang, 2021)
• Stem cell therapy uses healthy stem cells to repair or replace malfunctioning brain cells. Neurona Therapeutics is testing NRTX-1001, a regenerative therapy using interneurons derived from human stem cells. These cells produce GABA, a neurotransmitter that calms overactive brain activity. This groundbreaking trial could offer a non-destructive treatment option for drug-resistant temporal lobe epilepsy.
• Small molecule therapy uses small drugs that can interact with specific pathways or genes disrupted in epilepsy, providing targeted treatment options (Goldberg, 2021).
• Drug repurposing: Existing FDA-approved drugs for other conditions may work for epilepsy. For instance, a drug initially used for weight loss (fenfluramine) has successfully treated seizures in Dravet syndrome (Sullivan et al., 2023).

Tools to Monitor and Manage Epilepsy

Wearable devices can monitor body signals and alert caregivers to potential seizures. These innovations improve safety and give families peace of mind.

• Wrist-worn devices monitor movement, heart rate changes, and skin activity. Some also include GPS for location tracking. Companies like Empatica have developed medical-grade wearables, such as the Embrace smartwatch, to detect generalized tonic-clonic seizures and notify caregivers in real time.
• Armband devices detect muscle contractions and pulse rates – but may sometimes give false alerts.
• Smartwatches and apps pair with smartphones to send caregiver alerts during seizures. However, they are often not yet approved as medical devices.
• EEG-based devices detect subtle seizure activity that other tools might miss.

Cutting-edge devices like dry electrodes for EEG and brain-computer interface systems are transforming epilepsy care by improving seizure detection and prevention (Craik et al., 2023).

A Call to Action for Parents

Parents of children with DRE who are concerned about SUDEP and other causes of death in epilepsy can take proactive steps:

• Stay informed about new technologies, like seizure-detection devices.
• Advocate for better access to Comprehensive Epilepsy Centers.
• Participate in discussions about SUDEP prevention and epilepsy research.
• Seek a referral for an epilepsy surgery evaluation if your child has failed two anti-seizure medications.

Behavior and Mood Challenges in Children with Epilepsy

The Child Neurology Foundation held a symposium on Harmful and Disruptive Behavior in Epilepsy.

Epilepsy affects more than seizures—it impacts mood, behavior, and daily life. Anxiety, depression, hyperactivity, and impulsivity are common in children with epilepsy. These issues may be related to the condition itself, side effects of anti-seizure medications (ASMs), or other factors like poor sleep or changes in routine.

Parents and experts shared strategies to help families manage these challenges. Key recommendations included early screening, treating related issues, and using a team approach.

What Causes Behavioral Challenges?

• Anti-Seizure Medications (ASMs): While ASMs control seizures, they can also affect mood, sleep, and behavior. For example, Levetiracetam (Keppra) may cause irritability or aggression, while Valproate (Depakote) can help stabilize mood. Side effects are more common in those with pre-existing psychiatric conditions.
• Sleep issues: Poor sleep impacts both seizures and behavior, and seizures can impact sleep. Establishing consistent bedtime routines, using melatonin (under medical guidance), and adjusting medication schedules can help.
• Comorbid conditions (Aaberg et al., 2016; Oh et al., 2017): Many children with epilepsy have additional challenges (called comorbid conditions) that can contribute to behavioral difficulties.
• Medical issues:
  • Stomach and digestive problems: Constipation is common, especially in children with autism or developmental delays. Adding fiber and fluids can help.
  • Bone weakness: Some epilepsy medications affect bone health. Calcium and vitamin D are essential for strong bones.
  • Hearing and vision problems: Catch these early because they impact learning delays.
  • Headaches and migraines: These often happen with epilepsy and can make behavior worse. Treating migraines may help.
  • Dental health: Seizures can lead to dental injuries. Regular dental care is essential.
• Developmental and Emotional Issues
  • ADHD (Attention Issues): Many kids with epilepsy also have trouble focusing. Treatment for ADHD can improve school and home life.
  • Autism: Autism is common in children with epilepsy. Therapies can help with communication and behavior.
  • Anxiety and depression: These can make life harder for children and families. Therapy and, sometimes, medication can help.
  • Sensory processing issues: Trouble handling sounds, lights, or touch can affect daily life. Occupational therapy may help.

How to Help Your Child

Behavior checklists, early screening, and open communication with your child’s healthcare team can help identify issues. Once your child has been diagnosed, some treatment options include:

Therapies:

• Cognitive Behavioral Therapy (CBT) is effective in reducing anxiety and depression, which can make seizures and behavior worse.
• Applied Behavior Analysis (ABA) helps children, especially those with autism, build skills and manage behaviors.

Non-Medication Strategies:

• Ketogenic diet: Known for controlling drug-resistant seizures, it may also improve behavior and cognitive function. Careful monitoring is essential.
• Supplements: Magnesium may help with relaxation and headaches, melatonin can improve sleep, N-acetylcysteine (NAC) has been studied for mood disorders and OCD, and fish oil can help focus and attention when combined with ADHD treatment. Always discuss with your child’s doctor before trying any new supplements.
• Routines: To reduce stress and anxiety, keep home and school schedules consistent.
• Physical activity: Regular exercise improves mood, attention, and energy. (Effects of physical exercise in people with epilepsy; The relationship between physical activity and cognitive function in people with epilepsy; )

Medications:

• ASMs with Mood Benefits: Drugs like Carbamazepine and Valproate control seizures and stabilize mood. Clobazam can address anxiety. Cannabidiol (CBD) can have calming effects and treat seizures. (There is currently a clinical trial of Epidiolex® for anxiety in pediatric epilepsy.)
• Psychiatric medications: If ASMs aren’t enough, antidepressants (e.g., fluoxetine/Prozac) or antipsychotics (e.g., Risperidone) may address severe mood or behavior issues.

Monitoring and Follow-Up

Regular healthcare check-ins ensure medications are effective and side effects are managed. Watch for changes in mood, sleep, or weight. Adjust treatment as needed to improve your child’s quality of life.

Whole-Family Support

Behavioral challenges can strain families. Support services like counseling, speech therapy, and occupational therapy can help. Connecting with other families in similar situations also provides valuable insights and emotional support.

Building a Care Team

Your child’s care team should include doctors, therapists, and educators working together to create a tailored plan.

Open communication about benefits, side effects, and progress is key to helping your child thrive. Addressing both seizures and behavioral challenges can help your child live a more balanced and fulfilling life.

Innovations in Epilepsy Surgery

Sessions throughout the conference highlighted many advancements in treatments and tools, offering real hope for better outcomes and improved quality of life.

Neurosurgery: Innovations in Treatment

• Advanced tools like MEG Maps™, which use magnetoencephalography (MEG) to create detailed brain activity maps, help doctors pinpoint where seizures start in the brain, improving surgical precision and outcomes for children with DRE.
• Laser interstitial thermal therapy (LITT) is a minimally invasive and promising option for children with drug-resistant epilepsy. Though slightly less durable long-term than open surgery, LITT’s reduced risks and quicker recovery make it a valuable option for families.
  • Research shows that LITT provides seizure control rates comparable to open surgery for temporal lobe epilepsy and epilepsy-associated tumors, with shorter recovery times and fewer side effects (Youngerman et al., 2023; Hedaya et al., 2022).
  • MR-guided LITT (MRgLITT) has been particularly effective in children, with studies reporting successful treatment of seizure-causing brain areas and no complications (Curry et al., 2012).
  • It has also shown success in managing epilepsy caused by tuberous sclerosis when targeting the right brain areas (Stellon et al., 2019).
• Neuromodulation devices like vagus nerve stimulation (VNS), deep brain stimulation (DBS), and responsive neurostimulation (RNS) are essential options for treating drug-resistant epilepsy, especially when surgery isn’t possible or hasn’t worked. (Ryvlin et al 2020; Haneef and Skrehot 2023) Experts emphasized the importance of customizing neuromodulation treatments to each patient’s unique brain activity and improving outcomes through better targeting and ongoing research (Venkatesh et al., 2023; Torres Diaz et al., 2021).
  • Vagus Nerve Stimulation (VNS) has proven effective for treating seizures, with ongoing technological improvements, including longer battery life, advanced programming options, and newer closed-loop systems for better seizure management (Afra et al., 2021).
  • Responsive Neurostimulation (RNS) is showing promise for treating drug-resistant epilepsy, including generalized epilepsy like Jeavons syndrome and focal onset seizures (FOS). Studies highlight its long-term benefits, with seizure reductions of up to 75%, improved quality of life, and low risks of serious side effects (Kokkinos et al., 2020; Nair et al., 2020; Razavi et al., 2020). RNS also aids in identifying seizure origins through chronic EEG monitoring, which can guide successful surgical interventions for conditions like mesial temporal lobe epilepsy (Hirsch et al., 2020).
  • Deep Brain Stimulation (DBS) is showing promise for children and young adults with Lennox–Gastaut syndrome (LGS), a severe form of epilepsy that is often resistant to medication. A study on DBS targeting the centromedian nucleus (CM) of the thalamus found that 59% of patients had significant reductions in seizure activity recorded on EEG, and nearly half had at least a 50% reduction in seizures reported in their daily lives (Dalic et al., 2021). These findings highlight DBS as a potential option for improving seizure control in children with LGS who have not responded to other treatments. DBS studies in adults showed long-term seizure reduction (up to 75% median reduction over 9 years) and its potential to reduce SUDEP risk (Salanova et al., 2021).
• Artificial Intelligence (AI) is transforming how epilepsy is managed, offering hope for families navigating this challenging condition. Researchers highlighted how AI-powered tools are helping predict seizures and improve surgical outcomes.
  • Wearable devices using Spiking Neural Networks (SNNs) aim to provide real-time seizure predictions, making life safer and more manageable for children with epilepsy (Hakeem et al., 2022).
  • AI is improving how doctors identify seizure-causing brain regions, even between seizures. Algorithms analyzing brain activity can pinpoint these zones with 73% accuracy and predict surgical success with 79%, outperforming traditional methods (Gunnarsdottir et al., 2022). Machine learning has also been used to detect subtle lesions, like focal cortical dysplasias and hippocampal sclerosis, improving surgical planning for children with drug-resistant epilepsy (Bernasconi et al., 2024).
  • These advancements, combined with AI’s growing ability to guide surgical interventions and predict treatment responses, offer new possibilities for personalized care. By integrating AI into epilepsy management, families can look forward to more accurate diagnoses, better treatments, and improved outcomes (Wang et al., 2024; Splitkova et al., 2024).
• Presurgical Evaluations: Doctors can better discover where seizures start in the brain using video EEG, MRI, and functional imaging tools. Thorough evaluations are necessary for a skilled, multidisciplinary team to provide the best treatment options (Trinka et al., 2024).

Supporting Families After Surgery

At the Alliance, we’re committed to helping families navigate life after surgery. Many families have told us that knowing what to expect helps them feel more prepared.

During our scientific meeting on Symptom Surveillance After Hemispheric Surgery, experts shared key areas to watch for:

• Hydrocephalus: a potential risk that requires regular monitoring.
• Learning challenges: up to 30% of children need extra support at school.
• Motor skills: physical therapies and treatments like casting or bracing can help children move and function better.
• Endocrine issues: excessive weight gain, loss of thirst, and early puberty are common issues that need attention.

We’re working hard to ensure families have the tools and support to thrive after surgery.

Addressing trauma

Our founder, Monika Jones, candidly shared her son’s extensive epilepsy surgery journey as part of her work on the American Epilepsy Society’s Infantile Epilepsy Treatment Guidelines working group.

Her message to care teams was clear:

• Start early: Talking about epilepsy surgery sooner can improve outcomes.
• Support families: Counseling can help families navigate a profoundly traumatic experience. Epilepsy affects the whole family, and caring for emotional well-being is just as important as physical health.
• Work together: Families need trusted care teams who communicate clearly and honestly.

 

Addressing health equity

Disparities in epilepsy care remain a big issue.

The special session, Equity in Health: Understanding Disparities & Working Towards Solutions, sponsored by UCB and the IMPACT (Initiatives for Mobilizing Equitable Patient Access, Care, and Treatment) Epilepsy Initiative, focused on families’ challenges in accessing epilepsy care. Issues like transportation, financial struggles, and limited access to specialists continue to impact underserved communities.

Experts and attendees shared practical solutions, including caregiver resources, community programs, and free, evidence-based self-management tools like HOBSCOTCH (for cognitive challenges) and UPLIFT (for mental health support). They emphasized the importance of clear, timely information and the need for clinics to work closely with community organizations and families to improve care.

One key takeaway was the importance of using data to identify who needs the most help and focusing efforts there.

• Programs like community health workers and family advocacy networks can help close these gaps.
• Support for families struggling with social needs like housing, transportation, and navigating care is also essential.
• Connecting families to existing programs and strengthening partnerships between clinics and community resources can help ensure more children and families get the care they need.

Building partnerships

In addition to the PAME meeting, Monika joined the Rare Epilepsy Network (REN) luncheon with PESA’s Scientific Advisory Board member, Dr. George Ibrahim, a renowned neurosurgeon from Sick Kids Toronto. She also participated in the Infantile Spasms Action Network (ISAN) meeting with PESA’s Director of Development, Nicole Murray.

These meetings brought together doctors, researchers, and advocates to share ideas and strengthen partnerships. Working together makes real progress possible.

 

Why it matters

The AES conference is about improving epilepsy care, sharing tools for recovery, and advocating for families like yours. We’re here to help you:

• Understand risks and all available treatment options for drug-resistant epilepsy.
• Access resources to support your child after surgery.
• Connect with other families who truly understand your journey.

Looking ahead

This meeting was a powerful reminder of how far epilepsy care has come—and how much work lies ahead. I’m inspired by the doctors, researchers, and families working together for better treatments and a brighter future.

Thank you for trusting us to walk this journey with you. You are not alone—we are here every step of the way.