Template to craft testimony for Seizure Safe Schools Legislation

Below is a sample outline that you can use to begin drafting your testimony. 

Please feel free to amend the template, however, we do advise you stick fairly close to the sample. Everything that is [in red] indicates an area that should be tailored to you. For epilepsy-specific population numbers in your state, please use CDC data: https://www.cdc.gov/epilepsy/data/index.html.

When a hearing is announced, EFNE will inform you of the date, committee name, and contact information for you to use to update and submit your testimony.

Remember - your lived experiences are so valuable! It is real stories like yours that put a face to the issues. It is real stories that move them to support these bills. This is what legislators understand best, how their decisions impact real individuals. Thank you for sharing your story.

Subject: Testimony in Support of Seizure Safe Schools Legislation 

Dear [Chairperson Name and Committee],

My name is _________ and I live in [name of town]. I [live with epilepsy, am a family member/caregiver of someone living with epilepsy, am a health care professional in the epilepsy field, lost a loved one to epilepsy, etc.]. I [submit this testimony/am testifying today] as an Epilepsy Foundation New England volunteer advocate. 

Epilepsy is a disorder of the brain causing reoccurring seizures. It is made up of many diverse types of seizures, affects people throughout the lifespan, and can have different causes and associated conditions. There are [insert number of people living with epilepsy in your state, see CDC link above] living with epilepsy in [state]. According to the CDC, one in twenty-six people will develop epilepsy during their lifetime.

{Please add a few paragraphs of your own/your family’s story regarding experiences you have/had in school settings. As you draft this, please think about how your/your family member’s school experience would have been different if the Seizure Safe Schools bill was already the law. For example, has your child been denied school services because of their epilepsy? Have you been excluded from participating in any school activities? Have you had any obstacles getting seizure rescue meds administered as needed? Any problems with the school not following an IEP or 504 plan?}

As a [person living with epilepsy, family member/caregiver of someone living with epilepsy, a health care professional in the epilepsy field, lost a loved one to epilepsy, etc.] I urge you to pass this legislation on behalf of the [insert number of children} living with epilepsy in this state. Students living with epilepsy deserve to feel safe in school, reach their full academic potential, and build meaningful friendships without fear of being stigmatized.

Sincerely,

[Your Name]