Stacia Kalinoski has worn many hats—news reporter, marathon runner, author, filmmaker, and substitute teacher—but epilepsy changed the course of her life in ways she never expected. In this episode, Stacia gets real about the uphill battle that inspired her memoir Racing Uphill: the denial, the career shifts, and the moment she said yes to brain surgery. We talk about what friendship looks like when someone literally has to email your mom, why memory feels like treasure, and how creativity helped her piece together the story epilepsy tried to erase.

Follow the podcast on YouTube, Instagram and TikTok for extra clips and community convos!

Shout out to community partners Epilepsy Foundation of America, Danny Did Foundation, and Epilepsy Alliance America AND our sponsors Neurelis and SK life science! We get to stay in the race because of y’all! 

Hosted on Acast. See acast.com/privacy for more information.

Welcome to What the EF. I’m Landis Wiedner and this show is all about the “what the…?” moments that come with living with epilepsy. We share the stories that are usually whispered about or brushed aside, and we do it with honesty, humour, and heart.

This podcast is for anyone who has epilepsy, loves someone who does, or just wants to understand what it’s really like. You’ll hear from people living with seizures, their families, doctors, researchers, and advocates. Sometimes it gets heavy, sometimes it gets ridiculous, and most of the time it’s a mix of both.

We’ve worked hard to make What the EF feel like a place where people belong... whether you’re here for comfort, for laughs, or just to feel a little less alone.

Hosted on Acast. See acast.com/privacy for more information.

This week’s episode is one you’ll want to take notes on. Ayesha Akhtar, VP of Health Equity at the Epilepsy Foundation of Greater Chicago, isn’t just talking about change—she’s handing out the blueprint.

If you’ve ever wondered, “What can I actually do to make a difference for people with epilepsy?”—Ayesha’s got answers (and a few challenges you just might want to take on). Find out how education, advocacy, and community power can close the gaps—and how you can be part of it.

📲 Don’t forget to subscribe & follow on YouTube, Instagram and TikTok  for extra clips and community convos!

Big thanks to community partners Epilepsy Foundation of America, Danny Did Foundation, and Epilepsy Alliance America AND sponsors Neurelis and SK life science for keeping this community going strong.

Hosted on Acast. See acast.com/privacy for more information.

Coming in LIVE from the launch of the Otherside Lounge! 🎉 The Lounge is a brand-new space created for people with epilepsy to connect, decompress, and feel at home—whether at conferences or beyond. In this special episode, you’ll hear stories from the Lounge floor: why this space matters, what it feels like to finally have a spot designed with our community in mind, and how it’s already sparking conversations we didn’t know we needed. Think comfy couches, real talk, and zero judgment.

The Otherside Lounge is more than a hangout—it’s proof that when people with epilepsy come together, voices get louder, walls come down, and real change starts.

And don’t forget to follow the podcast on Instagram, YouTube, and TikTok for clips, behind-the-scenes, and more.

Shout out to community partners Epilepsy Foundation of America, Danny Did Foundation, & Epilepsy Alliance AND our sponsors Neurelis and SK life science! Thank you for believing in this podcast!

Hosted on Acast. See acast.com/privacy for more information.

Chynise may be a Senior VP of HR, but don’t expect corporate jargon here. Instead, she’s dishing on what it’s like to juggle seizures, side effects, and the fine art of pretending you didn’t have a seizure while giving a presentation. We get into the messy reality of finding the right meds (think: speed dating, but with more brain fog), the awkwardness of telling people you have epilepsy (spoiler: it’s not in the employee handbook), and that friendship might just be the best health benefit out there. Plus, Chynise shares insider tips on what HR can actually do to support employees with medical conditions.

Follow @whattheefpodcast on Instagram for more epilepsy content!

Shout out to community partners Epilepsy Foundation of America, Danny Did Foundation, and Epilepsy Alliance America AND our sponsors Neurelis and SK life science! Appreciate you for believing in this podcast! 

Hosted on Acast. See acast.com/privacy for more information.

What if a neuro conference had a space that centered around people with epilepsy—not just as patients, but as creators, leaders, and connectors? Enter the Otherside Lounge, a first-of-its-kind experience launching this September at the New England Epilepsy Conference (NEEC) in Boston.

Part café, part gallery, part community hub, the Lounge is designed *by* people with epilepsy *for* people with epilepsy. It’s where music plays, conversations flow, and connection takes the spotlight. No pity. No pressure. Just people coming together to relax, recharge, and reimagine what living with epilepsy looks like.

And we want you there.

Whether you live with epilepsy, care for someone who does, or work in the field—you’re invited to join us at the Otherside Lounge, September 4–6, 2025. Let’s make sure our voices are not just heard—but connected.

Shout out to Community Partners Epilepsy Foundation of America & Danny Did Foundation and sponsors SK life science & Neurelis for making convos like this possible!

Hosted on Acast. See acast.com/privacy for more information.

Dr. Avtar Roopra couldn’t believe what he was seeing: a medication that *stopped seizures* in mice—even AFTER they stopped taking it. No seizures. No meds. And even better? It restored cognitive function. Skeptical? So was Roopra and other scientists—until they repeated the results twice with the same outcome.

Even more shocking? This drug is already FDA-approved for other chronic conditions. So why isn’t this a breakthrough epilepsy treatment? Because NIH funding cuts have brought this promising research to a halt—and put its future in jeopardy.

Anne Morgan Giroux, founder of Lily’s Fund, which provided the seed funding for this research, joins us to explain why this matters and what you can do to help.

Donate to Lily's Fund: https://lilysfund.org/give/

Ask your reps to restore NIH funding: https://5calls.org/issue/nih-nsf-funding-cuts/

Shout out to Community Partners Epilepsy Foundation of America & the Danny Did Foundation and sponsors Neurelis & SK life science for making convos like this possible!

Hosted on Acast. See acast.com/privacy for more information.

She left her job as a newscaster because of epilepsy—and now she’s back at the same anchor desk. In this episode, Sarah Carlson talks about pretending she didn’t miss the job (she did), how she seized the opportunity to get back in, and the joy of being four years seizure free...while knowing her brain is still unpredictable.

We also get into survivor’s guilt, pressure to be perfect with sleep, and whether she’d be anchoring if she were still seizing.

Big thanks to our community partners Epilepsy Foundation of America and the Danny Did Foundation as well as sponsors Neurelis and SK life science!

The Faces of Medicaid - a story by Sarah Carlson: https://www.channel3000.com/video/the-faces-of-medicaid/video_411e072c-ecd8-57c0-ae07-e3838913f8df.html

Athletic support for people with disabilities: https://www.achillesinternational.org/

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Former Marine Jack lives with post-traumatic epilepsy—and calls it a “blast radius” of its own. From memory struggles to mindset shifts, he shares how he stopped apologizing for what epilepsy changed and started treating himself with compassion. Oh, and he also announced the introduction of the National Plan for Epilepsy to Congress. No big deal.

Shout out to the folks who support us in our blast radius! Community partners Epilepsy Foundation of America & Danny Did Foundation and sponsors Neurelis & SK life science

Hosted on Acast. See acast.com/privacy for more information.

Tommy had his first seizure (and dislocated shoulder 😬) senior year of high school—but kept chasing his dream of swimming at University of South Carolina. After the 2024 SECs, another seizure and shoulder pop (double ouch) changed everything. Still, he refused to let epilepsy take the water from him.

Big shout out to these folks for keeping the podcast afloat!

Community partners Epilepsy Foundation of America and Danny Did Foundation and sponsors Neurelis and SK life science

Hosted on Acast. See acast.com/privacy for more information.