Advocacy

Together, advocates can create positive change by shaping policy issues that impact the epilepsy community. Advocacy can take many shapes: using social media, meeting with legislators, hosting a gathering, and more.

Get involved by sharing your epilepsy story. Advocates like you are the cornerstone of our grassroots advocacy efforts, and we appreciate all that you do!

A large group of people stand together on the steps of the state capitol building.
A group of people sit and talk in a legislator's office.

Be part of a community voice speaking up to support our vision of a world where people with seizures realize their full potential. We are committed to empowering our advocates by arming them with the tools and information they need to successfully lobby for change. In the page below, you can find information on annual policy priorities, videos, apps, and educational opportunities to help you on your advocacy journey.

Stay informed and up-to-date on epilepsy community news by subscribing to our advocacy mailing list:

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
woman on stage talking about epilepsy advocacy
A young man with black hair and a black blazer adorned with purple ribbons stands at a podium to seppech

EFMN’s Advocacy Toolkit

Our toolkit includes detailed information on how to conduct a call with a legislator or their staff, write letters or emails to legislators, speak at town hall forums, and visit in person with your legislator.

2021 Advocacy Priorities

The 2021 Legislative session which started on January 5th looks a little different this year as we navigate a new virtual process. As lawmakers from across the state meet to set the state budget this year, they look to the community to inform the decisions they are making as policymakers. A renewed focus on community and personal health means your voice is even more important this year. In such unprecedented times, we are reminded of the power we have to share our stories and to shape policies here in Minnesota to improve the lives of individuals and their families living with epilepsy.

Seizure Smart Schools (SF 654, Lang/HF 469, Moller)

This year we continue our fight to pass Seizure Smart School Legislation which ensures that school personnel is prepared to recognize and respond appropriately and efficiently to a student experiencing a seizure. It is estimated that 7,400 children with epilepsy live in Minnesota, a state which has just over 3,000 public, private, and charter schools. By bringing awareness to the entire education community, students living with epilepsy or a seizure disorder can feel safe in school and reach their full academic potential. Five other states have passed Seizure Smart Schools Legislation including Kentucky, Indiana, Texas, Illinois, and New Jersey. Together, we can ensure that Minnesota joins the list in 2021.

Download Seizure Smart Schools One-pager

Rare Disease Access to Care (SF 464, Draheim/HF 626, Reyer)

A major priority this year is working with our partners at Gillette Children’s Specialty Healthcare to improve access to care for individuals with rare diseases. We know that on average a person sees eight providers before they are diagnosed with a rare disease and face year-long waits to receive the care they need. This legislation works to reduce barriers and streamline the processes, improving the flexibility of health plans to allow individuals to see the specialists they need for diagnosis and treatment.

Minnesota Human Rights Act Amendment

The Human Rights Act of Minnesota was written 17 years before the Americans with Disabilities Act (ADA). The gap between these laws means when individuals with disabilities are going through the interactive process with their employer to determine accommodations they can only receive help from federal agencies. This bill allows state agencies like the Minnesota Council on Disability and Minnesota Council on Human Rights to be more responsive and support people with disabilities to get the accommodations they need.

How can I help?

Share your story! One of the most effective ways to communicate the importance of these policies to lawmakers is by talking about what they would mean for you and your family. By meeting with your lawmaker and sharing how your experiences have been impacted you show the life-changing potential of these bills.

Become an Advocate! This year we are working to build out a vibrant community of epilepsy advocates from across the state. If you have a connection to epilepsy and are interested in learning more about how to shape policy, we would love to have you join us for our trainings, programs, and advocacy opportunities.

A group of people pose after an advocacy meeting with a legislator. Two of them wear purple ribbons to show their support for the epilepsy community.
Two women sit and talk with a legislator in his office, each holding pages of information.

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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