How You Can Help
Real support from people who live with epilepsy for people who live with epilepsy.
Not a Foundation, A Lifeline
I created The Epilepsy Awareness Project to fill a gap I’ve felt my entire life: a lack of centralized real-world, practical support for people living with epilepsy.
Support and resources for people with epilepsy by people living with it, not by practitioners who don’t know what it’s like to live every day just trying to figure out how to get through each one.
Because this illness is one that is uniquely complex—no two brains are alike, and treatment is never one size fits all.
Everything changed
When my grand mal seizures started up again around 2019 after 14 years without them I was scared because first: they’re terrifying in and of themselves, and second: I’m particularly medication-resistant and I had already been through more than a dozen seizure medications with limited success.
I was desperate for another option, and in 2020 I found out about a new neurological device being implanted in the brain called the RNS, (Responsive Neurostimulator).
Read more background about my process in my article for Medium
The RNS was very new, (it still is), and barely beginning to be used for conditions like mine; medication resistant Idiopathic Generalized Seizure Disorders, but they were having some real successes.
Once implanted in the brain, the device could be programed to detect “abnormal brain activity” (seizures) and redirect it. Essentially reeducating the neural pathways and stopping the seizures in their tracks.
It sounded like it might be worth a shot and I was desperate, so I became willing to undergo extensive neurological and psychological testing, a multi-day hospital stay during the height of the pandemic, and to have my case reviewed by a panel of over 30 specialists at Mass General—all just to qualify for brain surgery.
I became only the seventh person with my specific type of seizure disorder to receive a responsive neurostimulator (RNS), implanted by Dr. Mark Richardson, MD, PhD, and his team at MGH.
For the first two and a half years my RNS implant gave me freedom I hadn’t had in decades. I got off seizure meds, started driving again, and launched this project with hope and momentum.
Then the seizures returned.
Over the past year, I’ve been adjusting, experimenting with treatments, and we’ve slowly been learning that my brain is trying to go back to its old patterns, its well worn and familiar pathways and it’s been exhausting.
I’ve had to start taking medications again. I’ve had to stop driving again. I’ve had to re-learn how to live with epilepsy—again.
I had found a hope that I thought was forever lost, and then I had to start over.
But this time, I’m not doing it in silence.
It made me realize that I don’t want to wait for perfect health to help others.
I want to do it now.
your support in action
What began as a personal mission is now becoming a real resource—for me and for others navigating epilepsy.
Your support helps me:
Continue building a user-friendly website for people with epilepsy to access practical, illustrated, easily digestible support.
Share my story and artwork to raise awareness, reduce stigma, and give people hope.
Maintain the cost of web hosting, accessibility tools, and community-building resources.
Offer one-on-one support via chat to people who need to connect with someone who gets it.
why now?
Because I’m still in it. I know what it feels like to wake up afraid. To lose your independence. To grieve a freedom you thought you’d regained.
But I also know what it feels like to be seen, supported, and understood—and that’s what I want to give others.
I’ve reached out to foundations. I’ve asked for help from organizations. Doors didn’t open. So I built my own.
With your help, I can keep going—and make this something truly powerful.
🙌 Donate Now to Support The Epilepsy Awareness Project🙌
Every dollar helps me keep this work alive and growing. Whether it’s $5, $50 or more, your support means the world—and has real impact.
This isn’t about starting a foundation. It’s about building something real—something personal and practical.
Your support makes it possible for me to continue to create a central hub where people with epilepsy can find the kind of tools, strategies, and real-life insight that I’ve never been able to find anywhere else.
keep us going monthly
support the mission-one time donation
RECOGNIZED BY EXPERTS
ROOTED IN EXPERIENCE
💬 Did You Know?
This isn’t just a personal project—it’s a resource trusted by the very teams who helped change my life.
The Epilepsy Awareness Project is now an officially shared resource for RNS and epilepsy patients at Massachusetts General Hospital, through the teams of Director of Functional Neurosurgery, Dr. Mark Richardson, and Chief of the Division of Epilepsy and Epileptologist, Dr. Sydney Cash, MD, PhD.
From Patient to Partner: A Painting for MGH
In 2022, Dr. Mark Richardson commissioned me to create this three-panel piece for the BrainLab at Massachusetts General Hospital—a space where science, neurology, and art now meet.
Emily Kalina and Mark Richardson, MD, PhD, standing beside a commissioned installation by Emily in the Brain Lab at Massachusetts General Hospital, Boston MA,
-March 2022
Commissioned installation by Emily in the Brain Lab at Massachusetts General Hospital, Boston MA
-March 2022
AS SEEN IN PRACTICAL NEUROLOGY
My story—and my art—were featured in Practical Neurology’s October 2022 issue, sharing how I’ve built a creative life while navigating the unpredictable reality of a seizure disorder.
