Initiatives¶
The vision¶
About 53,700 Minnesotans had active epilepsy in 2015, 46,300 adults and 7,400 children, by CDC estimates published in 2017. The state has not yet published a direct count, so that figure is a national rate applied to the state's population, and every county-level number anywhere is the same kind of estimate. Most of what goes wrong for them is not medical. It is a school with no plan, a pharmacy that closed, a neurologist three hours away, a benefit nobody told the family about, a death nobody counted. Those are information problems, and information problems can be mapped.
EDAN is a student-led organization with one method. We use public data to find where the needs of people with epilepsy are not being met. We translate what we find into plain language. Then we put it in the hands of the organizations and lawmakers who can act on it. Everything we make is free and open.
Three initiatives for 2026-27¶
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1. Seizure-Safe Schools
We audited all 329 Minnesota school districts. Seven in ten post no findable seizure plan. Now we are turning findings into adoptions, district by district.
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2. Medication access
A missed dose can mean a seizure. We track shortages, prices, and pharmacy deserts, and we support reintroducing a cap on what epilepsy drugs cost families in 2027.
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3. SUDEP
The Minnesota Department of Health reports around 1,000 deaths a year related to epilepsy or seizures, and nobody counts SUDEP. We are working on the data, a benefit families miss, and a reporting law.
How the three fit together¶
The school work found the gap and built the tools. Medication access is what a family still faces after school is handled. SUDEP is the reason all of it matters.
The data behind all three goes to the Minnesota Epilepsy Program at the Department of Health, which a 2025 law (Minn. Stat. 145.9231) requires to report on epilepsy every year. Our distance to care map is part of that package: 101 districts sit more than 60 miles from a child neurologist.
Get involved¶
Students, nurses, clinicians, and families can help with every one of these. Write to edanmnorg@gmail.com.
What we do not do, and what to know about these pages
We are not a medical or legal service. We measure what is publicly findable and never label a district or provider "non-compliant." These pages are written by students from public sources and have not yet been reviewed by a clinician or the Epilepsy Foundation of Minnesota. We are seeking that review. Until then, treat everything here as information to bring to your own care team, not as medical advice.