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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!

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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 Shar McPherson

The message Shar McPherson shares with others is that if you want to create change, you need to speak up. Whether it’s to raise awareness, receive help, or push for legislative policies that improve the lives of people with epilepsy, Shar is a vocal advocate and invites others to join her.

Shar's Story
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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.

2020 Advocacy Priorities

Seizure Smart Schools (SF 1953, Lang/HF 1422, Baker)

Over 3.4 million Americans are currently living with epilepsy and seizures. Of the 3.4 million, there are 470,000 children living with epilepsy in the U.S. and it’s estimated that 7,400 of those children live in Minnesota, a state which has just over 3,000 public, private, and charter schools. For students with epilepsy, it’s important that school staff are well-equipped with the tools and knowledge to provide a safe and enriching environment.

EFMN supports this legislation which ensures that school personnel are not only prepared but can recognize and respond appropriately and efficiently to a student experiencing a seizure. By bringing awareness to the entire educational community, students living with epilepsy or a seizure disorder can feel safe in school and reach their full academic potential.

Seizure Smart Schools Legislation: Action Needed in 2020

Following Kentucky’s success in passing legislation in 2018, four additional states became leaders in this national movement in 2019 by passing versions of the Seizure Smart Schools legislation: Indiana, Texas, Illinois, and New Jersey. Together, we can ensure that Minnesota joins the list in 2020.

Ask your House Representative to support and sign on to HF 1422.

Prior Authorization Reform (SF 3204, Rosen/HF 3398, Morrison)

Prior authorization is the process that many health insurance companies use to determine if they will cover a prescribed medication or service. The process often prevents or delays access to a particular treatment option that your physician feels is most appropriate for your care. People with epilepsy who experience a delay in accessing their medication, or have their medication switched, due to onerous prior authorization requirements, are at higher risk for developing breakthrough seizures and related complications.

EFMN supports increased transparency in the prior authorization process, requiring responses to prior authorization requests within 36 hours, and qualified health care professionals in the same specialty reviewing the requests.

Patient Access to Prescription Drugs (SF 1006, Nelson/HF 1257, Cantrell)

Epilepsy medications are not interchangeable, and the treatment of epilepsy is highly individualized. Medication changes, limitations, or denials can be extremely dangerous. EFMN is a strong supporter of legislation that prohibits insurers from making mid-year changes to the prescription drug coverage included in healthcare plans. This legislation prohibits insurers from forcing a patient who is currently receiving a drug therapy from changing drugs until the end of the patient’s contract year and creates a community solution for providing real-time notification for drug coverage decisions.

Expand Access to Inclusive Child Care (SF 3473, Relph/HF 3693)

Across Minnesota, parents of children with disabilities and medical complexities are struggling to access consistent, high-quality, accessible child care. By creating grants for childcare providers to establish or expand inclusive settings, we can support them in meeting children’s individual needs, alleviate constraints on the homecare workforce shortage, and allow parents to work during the day.

Investing in grants for inclusive childcare will help ensure that children with disabilities receive support alongside their siblings and peers – resulting in long-term, positive benefits for all children, and building true belonging in the community from an early age.

Promote Employment at Livable Wages for People with Disabilities (SF 3003, Ulke/HF 2971, Cantrell)

Enhancing collaboration across state agencies and developing recommendations to expand customized, competitive, integrated employment can help ensure that all Minnesotans with disabilities have access to meaningful employment opportunities.

EFMN supports state agencies developing a coordinated plan for supported employment of transition-age youth and individuals with significant support needs.

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.