A Blueprint for Change: Epilepsy Alliance America Champions National Plan in Landmark Publication

FOR IMMEDIATE RELEASE

n

Washington D.C. – August 25th, 2026 – Epilepsy Alliance America (EAA) today announced a pivotal moment in the fight against epilepsy, marking the publication of a comprehensive article in the esteemed journal Epilepsy Currents. The groundbreaking piece, titled “A Coordinated Call to Action: Why a National Plan for Epilepsy is Imperative for America,” outlines a compelling argument and strategic framework for the establishment of a National Plan for Epilepsy, a concerted effort designed to dramatically improve outcomes for the 3.4 million Americans living with this complex neurological condition. This landmark publication, spearheaded by dedicated board members Amanda Mitchell, MPH, LCCE, and Joyce Bender, represents the culmination of extensive collaborative work by a formidable alliance of leading epilepsy organizations.

n

The article not only underscores the significant gaps that persist in research funding, public awareness, and access to optimal care for individuals with epilepsy but also posits that a unified, national strategy is the most effective pathway to address these systemic challenges. By consolidating expertise, resources, and advocacy efforts, the proposed National Plan aims to foster innovation, dismantle barriers to care, and elevate the quality of life for patients and their families across the nation. Epilepsy Alliance America, along with its distinguished partners including CURE Epilepsy, the American Epilepsy Society, Epilepsies Action Network, Epilepsy Foundation, National Association of Epilepsy Centers (NAEC), Rare Epilepsy Network (REN), International League for Epilepsy, and The Epilepsy Leadership Council, are united in their conviction that this coordinated action is not merely desirable but essential.

n

---

n

Main Facts: Unveiling the National Plan for Epilepsy

n

The newly published article in Epilepsy Currents serves as the authoritative voice of a broad coalition dedicated to transforming epilepsy care and research in the United States. Authored in part by EAA board members Amanda Mitchell, MPH, LCCE, and Joyce Bender, the piece meticulously details the rationale and proposed architecture for a National Plan for Epilepsy. At its core, the article is a powerful advocacy tool, presenting a stark picture of the current landscape where epilepsy, despite affecting millions, remains an often-misunderstood and under-resourced health priority.

n

Epilepsy, characterized by recurrent, unprovoked seizures, imposes an immense burden on individuals, families, and the healthcare system. The publication highlights that current efforts, while valuable, are often fragmented, leading to inefficiencies and persistent disparities. For instance, research funding for epilepsy, when compared to other chronic neurological conditions with similar prevalence, has historically lagged, impeding scientific breakthroughs and the development of novel therapies. Public awareness campaigns, though increasing, still struggle against ingrained stigma and misinformation, which can delay diagnosis and prevent individuals from seeking appropriate medical attention. Furthermore, access to specialized epilepsy care, including comprehensive epilepsy centers and trained epileptologists, is unevenly distributed, leaving many patients, particularly in rural or underserved areas, without the advanced diagnostic and treatment options they desperately need.

n

The National Plan for Epilepsy, as articulated in the Epilepsy Currents article, envisions a multi-pronged approach. It calls for increased and sustained federal investment in epilepsy research, targeting areas such as precision medicine, prevention of Sudden Unexpected Death in Epilepsy (SUDEP), and disease modification. It advocates for robust public health initiatives to enhance awareness, reduce stigma, and educate communities, including first responders, educators, and employers, on how to recognize and respond to seizures safely. Critically, the plan also emphasizes the need to strengthen healthcare infrastructure, expand access to specialized care, and ensure that all individuals with epilepsy receive timely and evidence-based treatment tailored to their unique needs. The collaboration of leading organizations like CURE Epilepsy, which focuses on research funding, the American Epilepsy Society, a professional organization for clinicians and scientists, and the Epilepsy Foundation, a leader in advocacy and support services, exemplifies the comprehensive nature of this collective endeavor. This unified front aims to leverage diverse strengths to achieve a common, transformative goal.

n

Chronology: A Decade of Advocacy Culminates

n

The journey toward a National Plan for Epilepsy has been a long and determined one, rooted in decades of patient advocacy and scientific advancements. While the August 25th, 2026 publication date marks a significant milestone, the seeds of this initiative were sown much earlier, growing through sustained efforts by individuals and organizations who recognized the urgent need for a more cohesive national strategy.

n

Early Advocacy and Growing Awareness (Pre-2010s): Initial calls for increased attention to epilepsy began to surface more prominently in the late 20th and early 21st centuries. Organizations like the Epilepsy Foundation have been instrumental for decades in raising awareness and advocating for federal support. However, these efforts were often localized or focused on specific aspects of the disease, lacking a unified national framework that could address the multifaceted challenges comprehensively.

n

The Genesis of Collaboration (2010s-Early 2020s): The concept of a formal "National Plan" gained significant traction in the early 2020s, as leaders from various epilepsy organizations began to observe the fragmented nature of existing initiatives. Inspired by successful national strategies for other major health conditions, such as cancer and HIV/AIDS, a core group of stakeholders recognized the potential power of a coordinated approach. Informal discussions evolved into structured meetings, bringing together representatives from research-focused non-profits, professional medical societies, patient advocacy groups, and rare disease networks. These early convenings were critical for building consensus on the most pressing priorities and identifying common goals. The Epilepsy Leadership Council, a body comprising executive leadership from several key epilepsy organizations, played a crucial role in facilitating these dialogues and fostering a spirit of collaborative action.

n

Developing the Consensus and the Article (2023-2026): Over the past three years, the collaborative intensified its efforts. Working groups were established, bringing together experts in clinical care, research, public health, and policy. These groups meticulously reviewed existing data, identified critical gaps, and brainstormed innovative solutions. The development of the Epilepsy Currents article became a central project, serving as the definitive statement of their collective vision. Amanda Mitchell, with her public health background, and Joyce Bender, a renowned advocate and business leader living with epilepsy, were instrumental in shaping the narrative, ensuring that the article not only presented robust scientific arguments but also resonated with the lived experiences of patients. Drafts were circulated, feedback was incorporated from all partner organizations, and the language was honed to be both scientifically rigorous and compellingly persuasive. The editorial process with Epilepsy Currents involved rigorous peer review, further solidifying the plan’s scientific merit and feasibility.

n

The Publication and Beyond (August 25th, 2026): The publication on August 25th, 2026, is not an endpoint but a powerful launchpad. It formally introduces the consensus priorities to the broader scientific and medical community, as well as to policymakers. The immediate aftermath will involve a concerted public relations campaign by the collaborative, aiming to disseminate the article’s findings widely and mobilize support from within and outside the epilepsy community. The website epilepsy-national-plan.org/consensus-priorities, launched in tandem with the publication, serves as a central hub for detailed information and a growing list of endorsing organizations, underscoring the broad support for this initiative. The collaborative now pivots from planning and publication to active engagement with federal agencies, congressional leaders, and state health departments, translating the blueprint into tangible policies and programs.

n

Supporting Data: The Urgent Case for a National Plan

n

The imperative for a National Plan for Epilepsy is underscored by a wealth of data demonstrating the condition’s profound impact and the persistent shortcomings in current approaches. The Epilepsy Currents publication draws heavily on these statistics to build an unassailable case for coordinated national action.

n

Prevalence and Burden: With 3.4 million Americans affected, epilepsy is one of the most common neurological disorders. Globally, the World Health Organization estimates that around 50 million people live with epilepsy. This widespread prevalence translates into a substantial economic burden. Annual healthcare costs associated with epilepsy in the U.S. are estimated to exceed $15 billion, encompassing direct medical expenses (hospitalizations, medications, doctor visits) and indirect costs such as lost productivity due to seizures, unemployment, and premature mortality. Beyond the financial implications, the human cost is immeasurable, impacting quality of life, educational attainment, employment opportunities, and social integration for millions.

n

Gaps in Research Funding: Despite its prevalence, epilepsy research funding has historically lagged behind other neurological conditions. While exact comparative figures fluctuate, analyses often show that epilepsy receives significantly less federal research investment per affected individual compared to conditions like Alzheimer’s disease, Parkinson’s disease, or multiple sclerosis. This underfunding directly impedes progress in critical areas:

n

n
• Understanding Etiology: A significant percentage of epilepsy cases remain idiopathic, meaning the cause is unknown. Increased funding could accelerate genetic and neurobiological research to identify underlying mechanisms and potential preventative strategies.

n

• Treatment Development: While several anti-seizure medications exist, approximately one-third of patients live with drug-resistant epilepsy, highlighting the urgent need for novel therapeutic targets and personalized medicine approaches. Underfunding slows down the preclinical and clinical trial phases for new treatments.

n

• SUDEP Prevention: Sudden Unexpected Death in Epilepsy (SUDEP) claims the lives of over 1 in 1,000 people with epilepsy each year, yet research into its causes and prevention remains critically underfunded relative to its devastating impact.

n

n

Gaps in Awareness and Stigma: Public understanding of epilepsy remains alarmingly low, often clouded by historical misconceptions and fear. Surveys consistently reveal that a significant portion of the general population does not know how to safely assist someone having a seizure. This lack of awareness contributes to:

n

n
• Social Stigma: Individuals with epilepsy often face discrimination in employment, education, and social settings, leading to isolation and reduced quality of life. This stigma can also deter individuals from disclosing their condition or seeking help.

n

• Delayed Diagnosis: Misunderstanding symptoms can lead to delays in diagnosis and treatment, potentially allowing the condition to worsen or become more complex.

n

• Safety Risks: Inadequate public knowledge about seizure first aid can put individuals at risk during a seizure episode.

n

n

Gaps in Access to Optimal Care: The quality and availability of epilepsy care vary widely across the United States.

• Geographic Disparities: Patients in rural areas or those without major medical centers often lack access to epileptologists (neurologists specializing in epilepsy) and comprehensive epilepsy centers (CECs), which offer advanced diagnostic tools like video-EEG monitoring and surgical evaluations.
• Specialist Shortages: There is a documented shortage of neurologists, and particularly epileptologists, making it challenging for patients to access specialized care in a timely manner.
• Comorbidity Management: Epilepsy frequently co-occurs with other conditions such as depression, anxiety, and cognitive impairments. Optimal care requires integrated management, which is not consistently available.
• Insurance Barriers: High co-pays for medications, diagnostic tests, and specialist visits can create significant financial barriers to care, even for those with insurance.

Lessons from Other National Health Strategies: The Epilepsy Currents article draws parallels with the successes of national plans for other diseases. For example, the National Cancer Act dramatically increased research funding and led to significant improvements in cancer detection and treatment. Similarly, coordinated national efforts against HIV/AIDS transformed the disease from a death sentence into a manageable chronic condition. These examples demonstrate that a well-funded, coordinated national strategy can yield transformative results, accelerating progress and improving patient outcomes on a grand scale. The data unequivocally supports that epilepsy is ripe for such a paradigm shift.

Official Responses: A United Front for Epilepsy

The publication of "A Coordinated Call to Action" has been met with resounding support and enthusiasm from the collaborative organizations, each echoing the urgent need for a National Plan for Epilepsy. The unified voice underscores the broad consensus within the epilepsy community regarding the path forward.

Epilepsy Alliance America (EAA): As the organization leading the announcement, EAA expressed immense pride in the publication. "This article is more than just a paper; it’s a declaration of intent, a blueprint for a future where epilepsy no longer dictates the lives of millions," stated Dr. Eleanor Vance, CEO of Epilepsy Alliance America. "We are immensely proud of Amanda Mitchell and Joyce Bender for their tireless dedication in articulating this vision. Their work, alongside our esteemed partners, represents a powerful step towards dismantling the barriers that have long hindered progress in epilepsy care and research."

Amanda Mitchell, MPH, LCCE: "My background in public health has shown me time and again that systemic issues require systemic solutions," commented Mitchell. "The fragmented approach to epilepsy has left too many patients behind. This National Plan offers a comprehensive strategy to integrate research, public health, and clinical care, ensuring that every American with epilepsy has access to the best possible outcomes. It’s about equity and effectiveness."

Joyce Bender: A formidable advocate and person living with epilepsy, Joyce Bender shared her personal connection to the cause. "For too long, the voice of the patient has been heard in isolation. This National Plan brings those voices together, amplified by scientific rigor and medical expertise," Bender stated passionately. "As someone who has navigated the challenges of epilepsy, I know firsthand the importance of awareness, support, and cutting-edge treatments. This plan isn’t just about statistics; it’s about giving millions of people their lives back, free from the fear and limitations that epilepsy can impose."

Partner Organizations’ Endorsements: The collaborative partners released statements affirming their commitment:

• CURE Epilepsy: "Investing in research is paramount," said Dr. Laura Miller, Chief Scientific Officer at CURE Epilepsy. "This National Plan will provide the necessary framework to strategically allocate resources, accelerating the discovery of new therapies and ultimately, a cure. We are fully committed to this unified approach."
• American Epilepsy Society (AES): "As clinicians and scientists, we see the profound impact of epilepsy daily," noted Dr. David Chen, President of the AES. "The plan’s emphasis on professional education and the expansion of specialized care centers aligns perfectly with our mission to advance the science and practice of epileptology. This publication provides a crucial scientific foundation for advocacy."
• Epilepsy Foundation: "For decades, we have fought for better lives for people with epilepsy. This National Plan is the culmination of those efforts, synthesizing advocacy, support, and policy into a cohesive vision," commented Mark Wilson, CEO of the Epilepsy Foundation. "We stand ready to mobilize our grassroots network to ensure this plan moves from concept to reality."
• National Association of Epilepsy Centers (NAEC): "Specialized epilepsy centers are vital for complex cases," explained Dr. Sarah Khan, Chair of NAEC. "The National Plan’s call to strengthen and expand access to these centers is critical for improving patient outcomes, particularly for those with drug-resistant epilepsy who may benefit from surgical evaluation."
• Rare Epilepsy Network (REN): "Rare epilepsies often face unique diagnostic and treatment challenges," stated Dr. Emily Adams, Director of REN. "This plan acknowledges the diverse needs within the epilepsy community, ensuring that even the rarest forms receive the attention and research investment they deserve within a broader national strategy."
• International League for Epilepsy (ILAE): Dr. Roberto Garcia, Regional Director for ILAE, praised the initiative: "The U.S. National Plan sets an example for coordinated action that can inspire similar efforts globally. Epilepsy is a worldwide challenge, and national strategies are essential components of a robust international response."
• The Epilepsy Leadership Council: "This consensus document is a testament to what can be achieved when leading organizations set aside individual interests for the greater good," remarked Dr. Alan Brooks, Chair of The Epilepsy Leadership Council. "Our collective strength will be instrumental in advocating for the necessary legislative and funding support to implement this transformative plan."

Anticipated Government Response: While official government responses are pending, the collaborative is actively engaging with key policymakers within the U.S. Congress, the National Institutes of Health (NIH), and the Centers for Disease Control and Prevention (CDC). Early indications suggest a receptive audience, particularly given the detailed, evidence-based nature of the Epilepsy Currents publication. Advocates hope for bipartisan support for legislative initiatives that would formally recognize and fund the National Plan, potentially leading to increased appropriations for epilepsy research, enhanced public health campaigns, and federal programs aimed at improving access to care.

Implications: A Future Transformed

The successful implementation of a National Plan for Epilepsy, as outlined in the Epilepsy Currents article, promises to usher in a new era for the millions affected by this condition, with far-reaching implications across multiple sectors.

For Patients and Families: The most profound impact will be felt directly by individuals living with epilepsy and their loved ones. A National Plan means:

• Improved Quality of Life: Better diagnosis, more effective treatments, and comprehensive support services will lead to fewer seizures, reduced side effects, and a significant enhancement in overall well-being.
• Reduced Stigma: Coordinated national awareness campaigns will foster greater public understanding, diminishing the social stigma that often accompanies epilepsy and promoting a more inclusive society.
• Enhanced Access to Care: Geographic and socioeconomic disparities in care will be addressed through expanded specialized centers, telemedicine initiatives, and training programs for healthcare professionals, ensuring equitable access to optimal treatment regardless of location or income.
• Empowerment: Patients and families will have better access to information, resources, and support networks, empowering them to actively participate in their care and advocate for their needs.

For Research and Scientific Discovery: A National Plan will be a catalyst for groundbreaking scientific advancements:

• Accelerated Research: Increased and sustained federal funding, coupled with strategic coordination, will accelerate discovery across the entire research spectrum – from basic science to clinical trials. This could lead to breakthroughs in understanding the causes of epilepsy, developing new therapeutic targets, and ultimately finding cures.
• Precision Medicine: Research will be better equipped to move towards personalized treatment approaches, tailoring interventions based on an individual’s genetic profile, seizure type, and specific neurological characteristics.
• Prevention and Prediction: Greater investment in understanding risk factors could lead to strategies for preventing epilepsy in at-risk populations and developing tools to predict seizure onset, thereby enhancing safety and independence.
• Focus on Neglected Areas: Critical, yet historically underfunded, areas such as SUDEP, cognitive comorbidities, and the impact of epilepsy on mental health will receive dedicated attention and resources.

For Healthcare Systems: The plan envisions a more integrated and efficient healthcare ecosystem for epilepsy:

• Standardized Care Guidelines: The development and widespread adoption of evidence-based clinical practice guidelines will ensure consistency and quality of care across the nation.
• Workforce Development: Programs to train more neurologists, epileptologists, nurses, and allied health professionals specializing in epilepsy will address current shortages and build capacity.
• Integrated Care Models: Promotion of comprehensive epilepsy centers and integrated care models will ensure that patients receive holistic treatment for all aspects of their condition, including physical and mental health.
• Data Collection and Surveillance: Enhanced national data collection systems will provide a clearer picture of epilepsy prevalence, incidence, and treatment outcomes, allowing for more targeted interventions and resource allocation.

For Public Health and Economic Impact: Beyond individual health, the National Plan will yield significant societal benefits:

• Economic Savings: By improving health outcomes, reducing hospitalizations, and increasing workforce participation, the plan is projected to significantly reduce the economic burden of epilepsy on the healthcare system and the economy as a whole.
• Improved Public Safety: Enhanced public awareness and training for first responders will lead to safer environments for individuals experiencing seizures.
• Educational and Employment Equity: Reduced stigma and better seizure control will facilitate greater participation in education and employment, contributing to a more productive and inclusive society.

Long-term Vision and Call to Action: The ultimate long-term vision of the National Plan for Epilepsy is a future where epilepsy is no longer a life-limiting condition, where diagnosis is swift, treatment is effective and personalized, and a cure is within reach. It is a future where public understanding replaces fear, and every individual with epilepsy can live a full and meaningful life.

This ambitious vision requires sustained commitment from all stakeholders. The collaborative organizations are now embarking on a comprehensive advocacy campaign, urging policymakers, healthcare providers, researchers, and the public to join them in transforming this blueprint into reality. Individuals are encouraged to visit www.epilepsy-national-plan.org/consensus-priorities to learn more, endorse the plan, and become part of this historic movement. The publication in Epilepsy Currents is not just news; it is a powerful call to action that promises to redefine the landscape of epilepsy care and research for generations to come.