Initiatives¶
The vision¶
About 53,700 Minnesotans live with active epilepsy, 7,400 of them children. 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 free resources in the hands of the people who can act, and we count the people whose lives changed. Everything we make is free and open.
The measure¶
By August 2027 we will document at least twenty people with epilepsy whose situation changed because of something EDAN did: a student now covered by a seizure plan, a family that got a covered alert device, a teen who found an adult neurologist. We count people, not page views. Progress is reported on this page.
Five initiatives for 2026-27¶
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:material-school:{ .lg .middle } 1. Seizure-Safe Schools
We audited all 328 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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:material-chart-box:{ .lg .middle } 2. The state's epilepsy data
A 2025 law makes MDH count epilepsy in Minnesota every year. We are offering our data as the first district-level input, and we will translate what the state publishes.
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:material-pill:{ .lg .middle } 3. Medication access
A missed dose can mean a seizure. We track shortages, prices, and pharmacy deserts, and we are backing a bill to cap what epilepsy drugs cost families.
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:material-map-marker-distance:{ .lg .middle } 4. Distance to care
101 districts sit more than 60 miles from a child neurologist. We mapped every district's distance to specialists, epilepsy centers, and pharmacies.
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:material-heart-pulse:{ .lg .middle } 5. SUDEP
About 1,000 Minnesota deaths a year involve epilepsy or seizures, and nobody counts SUDEP. We are working on the data, a benefit families miss, and a reporting law.
How the five fit together¶
The school work found the gap and built the tools. The state data partnership gives that work a permanent home in a public agency. Medication access and distance to care are the two things a family still faces after school is handled. SUDEP is the reason all of it matters.
Get involved¶
Students, nurses, clinicians, and families can help with every one of these. Write to edanmnorg@gmail.com, or start with How to Help.
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.