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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I would like to find out how to begin a campaign or fundraiser from an actual seizure patient as myself. There needs to Better education

A MyEpilepsyTeam Member asked a question 💭
Birchwood, TN

about it when EMT's& hospitals say " you're not having a seizure" when you know your own body & know that you are.😒

March 13
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
There was a time I was in the hospital having an EEG done. I started to have a seizure so my mom pressed the button. My mom said that when the doctors/nurses came to my room they asked her “ How do you know your son’s having a seizure” I had been having seizures for over 20 years at that point so my mom would know when I was having a seizure, plus the doctors should have been able to tell I was having a seizure. The patients know more than the doctors.

March 13 (edited)
A MyEpilepsyTeam Member

EMT has told me that if they get called to my seizures that I’ll have to pay them money for gas

March 13
A MyEpilepsyTeam Member

I dont know the best presaon to ask is the epilepsy foundation

March 13
MyEpilepsyTeam

How can you start a campaign or fundraiser as someone living with epilepsy to improve education about seizures?

It's incredibly frustrating when medical professionals dismiss what you know about your own body. Starting your own awareness campaign can help change that.

You have several creative options for fundraising and Show Full Answer

How can you start a campaign or fundraiser as someone living with epilepsy to improve education about seizures?

It's incredibly frustrating when medical professionals dismiss what you know about your own body. Starting your own awareness campaign can help change that.

You have several creative options for fundraising and advocacy:

* Host a lemonade stand through the Lemonade for Livy campaign
* Organize a Purple Pumpkin Project event where you decorate pumpkins and share on social media
* Create a livestream event (Stream For Epilepsy) doing something you enjoy
* Join an athletic challenge like a marathon and create a fundraising page to share your story
* Host your own event like a bake sale, movie night, auction, or party

The key is choosing something that fits your interests and lifestyle. You can create your own unique fundraiser that speaks to your experience and the education gaps you've witnessed firsthand. To amplify your message, use social media with epilepsy-related hashtags like #EpilepsyAwareness, #ShareMySeizure, or #AimForZero. This helps your posts reach more people who care about the cause.

You might also consider getting certified in seizure first aid through the Epilepsy Foundation's free course. This gives you credibility when educating others, including medical professionals, about proper seizure recognition and response. The certification takes about an hour and lasts two years.

Your lived experience as someone with epilepsy makes your voice powerful in advocating for better understanding and training in the medical community.

March 13
A MyEpilepsyTeam Member

That’s a great question . Many of us across the US and probable other countries, have experienced that
Maybe you could get advice thru your local Epilepsy Foundation.

March 13

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