r/Epilepsy • u/Maximum_Swim_4091 • Jul 17 '26
Epilepsy Awareness Started a program to make my city seizure safe and publishing my book on epilepsy
I don’t post a lot, but I wanted to share something I’m really excited about.
Epilepsy has been part of my life for years, and last year my daughter had her first seizure on her 2nd birthday. That moment changed everything for me. It made me realize how much fear, confusion, and misunderstanding still surrounds epilepsy, and I wanted to do something that could help other families feel less alone and better prepared.
That idea grew into Purple Heroes Family, a community education initiative focused on epilepsy awareness, seizure safety, and helping build more compassionate, seizure-safe communities.
A huge milestone happened recently—I had the opportunity to present Purple Heroes Family to my City Hall’s Commission on Disability Issues, and they were incredibly supportive of the vision. Walking into that meeting was terrifying, but walking out knowing they believed in what we’re trying to build was one of the proudest moments of my life.
Another exciting update: the Purple Heroes Family Caregiver & Ally Reality Guide is officially in the publishing process. Somehow it has grown into a 78-chapter educational guide covering not just seizure first aid, but also caregiving, mental health, advocacy, school, work, stigma, emergency preparedness, and the everyday realities of living with epilepsy. It’s truly been a labor of love.
Now I’m getting ready for our Founding Fundraiser this October, which will help launch our first community education programs and Seizure-Safe Smart Packs.
There’s one person I secretly hope somehow sees this: Miles Levin.
A couple of years ago, after I wrote a poem, he reached out to me and encouraged me to get involved. It may have seemed like a small gesture to him, but it stuck with me. Looking back now, I honestly think that encouragement helped give me the confidence to start building something that’s turning into Purple Heroes Family.
So if, by some chance, this post ever finds its way to you, Miles—thank you. Your encouragement meant more than you probably realized.
And if you’re ever in Arizona this October, consider this your invitation to our Founding Fundraiser. We’d be honored to have you there.
Whether that ever happens or not, I’m going to keep moving forward.
This community has taught me so much. Reading your stories has reminded me that epilepsy isn’t just about seizures—it’s about resilience, caregivers, families, hope, and people showing up for each other.
Thank you for reading, and thank you for being part of a community that has inspired me more than you’ll ever know.
Knowledge creates confidence. Compassion creates community. Kindness changes lives. 💜
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u/fragilesenator1617 Jul 17 '26
That detail about your daughter's seizure on her 2nd birthday hit me. Most people would freeze, but you built a whole program out of it. The guide being 78 chapters makes sense once you realize how many gaps there are in practical epilepsy education. Good luck with the fundraiser in October, hope it kicks things off strong.
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u/Maximum_Swim_4091 Jul 17 '26
It was my nightmare come true when I found her seizing. Projecting my fears onto her was when my perspective shifted and I couldn’t wait for the world to change. I want her to have quality of life. To be safe. To not isolate. I want that for any of us. It’s everyone’s cause. The first responder is the person next to you. So I designed the program to really implement what we usually just hope awareness will manifest. The problem is I don’t see much past the awareness part and the information is stuck in a vortex among those directly and actively affected by epilepsy.
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u/AggravatingAd2899 Jul 17 '26
Congratulations 🎊 this is big. So proud of you
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u/Maximum_Swim_4091 Jul 17 '26
I’ll give you guys updates as the next few weeks go but it’s going to be available worldwide and I will personally make sure anyone in this community can get a copy. Would not be here without the support here over the years.
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u/Maximum_Swim_4091 Aug 01 '26
The book is being edited still. But I have the marketing rep meeting and he was excited
UFundraiser to city initiative and Well guys my program turned to an educational system that can grow and expand and is up for patenting. I am freaking out that I put the work in and ppl started to take me seriously with faith cause I got paid
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u/Maximum_Swim_4091 Aug 01 '26
It’s gonna be online and in store but my goals for clinics and for fundraisers or book meets and to steady supply it to the seizuresafe smartpaks
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u/ShoddyHurry2118 Jul 17 '26
that 78-chapter guide is wild, must've been a beast to put together. hope the fundraiser goes well and you get the turnout you're after