Advocacy
At the Epilepsy Foundation of Minnesota, we are dedicated to raising awareness and securing resources to support people living with epilepsy. Our advocacy efforts focus on long-term, systemic change that improves health outcomes, increases access to care, and fosters an inclusive community for all individuals affected by epilepsy.
Your involvement can make a difference. Join us in advocating for the epilepsy community by reaching out to your legislators, participating in advocacy campaigns, and supporting our work through donations.
Together, we can help elevate epilepsy as a public health priority so no one faces epilepsy alone.
Current 2026 Legislative Priorities
Safeguarding Access to Essential Health Services for Minnesotans with Epilepsy
The Epilepsy Foundation of Minnesota (EFMN) advocacy work is guided by our commitment to ensure that all Minnesotans with epilepsy have the tools and resources they need to thrive, address gaps in care and education, and reduce stigma surrounding epilepsy.
We will advocate to protect and advance access to health care, especially life-saving services for Minnesotans with epilepsy. We will educate lawmakers and key decisionmakers on the public policy changes that are needed to support people living with epilepsy and understand epilepsy’s true impact on individuals and families.
Reduce Cost for Prescriptions and Medical Supplies
Currently, there is no cost-sharing limit for epilepsy-specific prescription and medical supplies.
This means that people with epilepsy may have to pay high co-payments and coinsurance for life-saving prescriptions or related medical supplies. Epilepsy Foundation of Minnesota supports the limitation of cost-sharing for prescriptions prescribed to treat epilepsy to $25 per one-month supply for each drug (regardless of the amount or type of medication required to fill the prescription) and $50 per month in total for all related medical supplies.
Raise Awareness of SUDEP and Early Mortality in Epilepsy
Sudden Unexpected Death in Epilepsy (SUDEP) occurs in more than one in 1,000 people with epilepsy and the risk increases to one in 150 for the 30% of individuals living with uncontrolled seizures.
SUDEP, status epilepticus, unintentional injuries (drowning, falls, auto accidents, burns), and suicide take the lives of even more individuals, but statistics underestimate the problem due to poor recognition, incomplete death records, and misattributed causes of mortality.
Many people living with epilepsy have never been told about the risk of SUDEP and if they themselves are at high risk. Risk counseling focused on all causes of epilepsy mortality, including SUDEP, can help mitigate risk and prevent unnecessary deaths. Unfortunately, these resources are often unavailable due to lack of awareness and education, and the absence of consistent reimbursement for post-diagnosis education and case management services.
In 2026, EFMN will build awareness amongst legislators about SUDEP and early mortality in epilepsy, as well as the need for more education, prevention, and healthcare incentives to help reduce the risk and occurrence across Minnesota. EFMN will plan to introduce legislation in 2027.
National Advocacy Efforts
Check out the advocacy efforts of our national affiliate, the Epilepsy Foundation, in Washington, D.C.!
Easy Steps to Advocate
Advocacy Resources
What to Say to your Legislator
We’ve partnered with Fredrikson & Byron to show how easy it is to meet with your legislator. Our video shows what to expect when meeting with legislators and gives tips on what to say (and what not to say) during a meeting.Telling Your Story App
The Minnesota Governor’s Council on Disabilities has a free tool for advocates to compose and practice their story. The app guides users through the steps, from introducing yourself to identifying the specific issue, to the best methods for presenting a compelling story.Partners in Policymaking Online Course
The Minnesota Governor’s Council on Disabilities offers this online course to help individuals create positive change through advocacy. The three-hour self-study course includes information about the legislative process, public policy, advocacy, and organizing.Communicate with your legislator in Spanish, Somali, or Hmong
To get an interpreter, your legislator and/or their staff have to make a request with the Legislative Coordinating Commission (LCC). If you'd like help contacting your legislator through an interpreter, please reach out in your preferred language to EFMN's Director of Health Equity, Angela Bowles Edwards at 651-368-6209 (call/text) or abedwards@efmn.org.Voter Resources
Find information on how to register and where to vote. Learn about what is on the ballot and find the election results.Thriving with Epilepsy
Meet Kyah Altiere
Kyah become involved in advocacy after being prescribed toxic levels of her anti-seizure medication. She became more involved in her medical care and started advocating for others with epilepsy.
Kyah' Story
Get involved with EFMN
Donate your time to make a difference in someone else’s life. EFMN has year-round volunteer opportunities for a variety of programs and events with the epilepsy community.
Volunteer