National Epilepsy Awareness Month (USA)

 

Introduction

Each November the United States marks National Epilepsy Awareness Month (NEAM), a time dedicated to increasing public understanding of epilepsy, reducing stigma, supporting those living with seizures, and advancing research. (Epilepsy Foundation)
Despite affecting millions, epilepsy remains misunderstood. This report outlines the purpose of NEAM, key facts about epilepsy, focal themes of the month, actions individuals and communities can take, current challenges, and links to helpful resources.

 

What is Epilepsy?

Epilepsy is a neurological condition marked by recurrent seizures — sudden, uncontrolled electrical disturbances in the brain. The term “the epilepsies” is often used to reflect the many different types and causes of seizure disorders. (NINDS)

Key Facts

• In the U.S., approximately 3.4 million people have epilepsy. (NeuroPace, Inc)

• One in every 26 people will develop epilepsy at some point in their lifetime. (NINDS)

• Seizures vary widely: from staring spells to full convulsions; from seconds to minutes. (NeuroPace, Inc)

• Causes include brain injury/trauma, infections, genetic predisposition, strokes, or unknown causes (“idiopathic”). (NINDS)

• About one-third of people with epilepsy have seizures that are not fully controlled by current treatments. (NeuroPace, Inc)

 

Purpose of National Epilepsy Awareness Month

NEAM serves multiple inter-linked goals:

1. Raise public awareness — Many people still hold myths or misunderstandings about epilepsy (for example, that someone with epilepsy cannot work, cannot drive, or will necessarily lose cognitive ability). (Epilepsy Foundation)

2. Reduce stigma and isolation — People living with epilepsy often feel socially isolated or fearful of disclosure. NEAM gives them a platform. (Epilepsy Foundation of Michigan)

3. Promote education and preparedness — Knowledge about seizure first aid, trigger avoidance, treatment options and support resources improves safety and quality of life. (Epilepsy Foundation)

4. Advance research and advocacy — Raising awareness helps mobilize funding and attention for improved treatments, and ultimately, a cure. (CURE Epilepsy)

 

Themes and Messaging for NEAM

Each year, organizations behind NEAM select a theme or campaign to focus efforts. For example:

• The Epilepsy Foundation uses the call to action “Share Your Purple Power”: encouraging individuals to wear purple, share stories, and take meaningful action. (Epilepsy Foundation)

• The Epilepsy Alliance America used the theme “Empowering Every Journey” for November 2024 — emphasizing that each person’s epilepsy journey is unique and deserving of support. (Epilepsy Alliance America)

The use of the color purple is widely adopted as the epilepsy-awareness color. (Cerebral Palsy Guide)

 

What Individuals and Communities Can Do

For individuals (living with epilepsy or supporting someone who is):

• Learn and share seizure first aid basics (e.g., how to respond during a tonic-clonic seizure, when to call emergency services).

• Keep a seizure diary: record details such as duration, triggers, medication adherence, and post-seizure effects.

• Talk openly about epilepsy to reduce stigma — share your story if comfortable; join support groups.

• Advocate for yourself in medical settings: ask about specialist referrals, treatment options, and support services. (NeuroPace, Inc)

For communities, workplaces, schools:

• Host an epilepsy-awareness event during November: e.g., talk by a neurologist, walk/fundraiser, display purple ribbons.

• Provide seizure-safety training in schools, offices, community centers. (National Association of School Nurses)

• Use social media: share posts, facts, graphics; use hashtags like #NEAM2025, #AllInForEpilepsy. (Epilepsy Foundation)

• Ensure environments are inclusive: accessibility in school/work, understanding of accommodations (e.g., driving restrictions, shift work limitations).

• Collaborate with local epilepsy organizations to support outreach.

Policy & advocacy actions:

• Contact elected officials to support funding for epilepsy research and services.

• Encourage insurance coverage and equitable access to epilepsy care (including for rare forms).

• Promote public health campaigns that address the broad impact of epilepsy (mental health, cognition, comorbidities).

 

Current Challenges & Opportunities

Challenges

• Stigma: Despite publicization, societal misunderstanding persists — people may still fear or avoid someone with epilepsy. (Epilepsy Foundation)

• Treatment-resistance: About 1/3 of patients don’t achieve seizure freedom with standard therapies. Managing drug-resistant epilepsy remains a challenge. (NeuroPace, Inc)

• Research funding: While progress is being made, epilepsy research often receives less funding compared to other neurological disorders. (CURE Epilepsy)

• Access and disparities: Access to epilepsy specialists, advanced diagnostics and therapies varies by region, socio-economics, and race.

• Associated conditions: Epilepsy often co-occurs with other issues: cognitive delays, mood disorders, memory issues, certain rare syndromes. Awareness must cover these. (Epilepsy Foundation of Michigan)

Opportunities

• Better public education in November creates a ripple effect year-round — more teachers, employers and community members understand epilepsy.

• Advances in treatments: surgery, neurostimulation, gene therapy and precision medicine are emerging. The NIH and related organizations are supporting collaborative research networks. (NINDS)

• Digital tools and social media allow broader connectivity between those affected, caregivers, and professionals — reducing isolation.

• Workplace and school accommodations are increasingly better understood and enforced, enabling fuller participation of people with epilepsy.

• Fundraisers during NEAM contribute to both community support and research investment.

 

How to Measure Impact

During NEAM and beyond, stakeholders can measure impact by tracking:

• Number of public events held, social media posts/hashtags used.

• Participation in seizure-first-aid training sessions.

• Increased inquiries to epilepsy organizations or local chapters.

• Policy changes, funding commitments for epilepsy research.

• Improved patient outcomes: reduced stigma (via surveys), improved seizure control, better quality of life.

 

Resources & Links for Further Information

Here are key organizations and resources for learning, support, and action:

• Epilepsy Foundation — official NEAM page, resources on seizures, first aid, local chapters.
  Link: https://www.epilepsy.com/volunteer/spreading-awareness/national-epilepsy-awareness-month (Epilepsy Foundation)

• CURE Epilepsy — research-focused organization, info on awareness days and advocacy.
  Link: https://www.cureepilepsy.org/get-involved/awareness-days/epilepsy-awareness-month/ (CURE Epilepsy)

• Epilepsy Alliance America — network of regional epilepsy agencies; campaign materials, events.
  Link: https://www.epilepsyallianceamerica.org/campaigns/national-epilepsy-awareness-month-november-2024/(Epilepsy Alliance America)

• National Institute of Neurological Disorders and Stroke (NINDS) — scientific background on epilepsy and research priorities.
  Link: https://www.ninds.nih.gov/news-events/directors-messages/all-directors-messages/ninds-recognizes-national-epilepsy-awareness-month (NINDS)

• School-specific resource: National Association of School Nurses offers toolkits for managing students with epilepsy.
  Link: https://www.nasn.org/blogs/nasn-inc/2024/10/30/recognizing-national-epilepsy-awareness-month (National Association of School Nurses)

 

Summary & Call-to-Action

November’s National Epilepsy Awareness Month is more than symbolic: it is a practical opportunity. When individuals, families, schools, employers, and communities get involved, we reduce stigma, spread knowledge, improve safety, and accelerate progress.
Here’s a quick action checklist you or your group can commit to this November:

• Wear purple or display a purple ribbon.

• Share an epilepsy-related post or fact on social media using campaign hashtags.

• Take or host a seizure first-aid training.

• Share a personal story (if comfortable) or encourage someone you know with epilepsy to share theirs.

• Donate or fundraise for epilepsy research and support services.

• Reach out to your local school/workplace and ask: “How do we handle seizures? Are we prepared?”

• Advocate to your elected officials about epilepsy research funding and equal access to care.

By doing these, you become part of “All In” for epilepsy. Ultimately, the goal is a society where no one with epilepsy feels alone, misunderstood or unsupported — and where research brings us closer to seizure freedom and a cure.