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What the Ef?!
How Do I Actually Track My Seizures? with Mukki Gill
In this convo with Mukki Gill, founder of ZOR!, she talks about changing the game in epilepsy apps by synthesizing all of that data into one clear, usable place. After watching her mom take notes that look like “Santa’s list” for her brother’s Dravet’s Syndrome, Mukki wanted to create a simpler, more useful format for people with epilepsy.
My seizure info seems to be everywhere—Notes app, calendars, wearables, half-remembered symptoms, and “I’ll explain it to my doctor somehow.” Enter the ZOR! app, which takes data from your Apple Watch to coexist with your epilepsy info. No matter searching for patterns–this app does it for you!
Oh, and have you ever wondered how seizure alert dogs know when a seizure is coming? Mukki has, too–and is planning on elevating the ZOR! app to use that science to *predict* our seizures! Get ready to be inspired and excited about some life changing tech!
Learn more and sign up for ZOR! app: https://zor.llc/
Be sure to follow @whattheefpodcast on Insta, YouTube, and TikTok for more on the good, the bad, and the hilarious parts of living with epilepsy.
Learn more here: whattheefpodcast.com
Huge shout out to the people who believe in this podcast! Sponsors SK life science & Neurelis and community partners Epilepsy Foundation of America, Danny Did Foundation, and Epilepsy Alliance America!
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7. Music, Seizures, & Showing Up with Drew Dixon (ft. Electric Minds co-founder Dr. Dan Snelgrove)
53:20||Season 11, Ep. 7You’d never guess that Drew Dixon quit guitar lessons at 7 years old. But through this same childhood whimsicality, a journey began in which he discovered a deep belief in music’s effects on the brain and the soul. Now Drew has a successful music career that his 7-year-old self would never believe — including his recent hit "Running." (Stay to the end for an acoustic play of it!)Drew shares his songwriting process, what it actually takes to survive the music industry (full rooms, empty rooms, overnight tours — you play them all), and his work doing music therapy with hospital patients. And how he manages all of this while managing his epilepsy. We rewind and talk about the normalcy of keeping epilepsy a secret as a teenager and why Drew didn’t even tell his childhood friend who *also* has epilepsy and what happened when he did….you might recognize this friend! Dr. Dan Snelgrove (re: “The Pitt” episode) joins the convo to talk about his and Drew’s journey co-founding Electric Minds Foundation, a nonprofit dedicated to bringing joy — and Disneyland — to kids with epilepsy.Check out Electric Minds Foundation: https://www.electricmindsfoundation.org/ Shout to Neurelis, SK life science, Epilepsy Foundation, Danny Did Foundation, & Epilepsy Alliance America for believing in this podcast!
6. How AI Helped Me Process Epilepsy with Katie Czyz
57:52||Season 11, Ep. 6Never did Katie Czyz think she'd become an expert in AI. She started using it while trying to process her epilepsy diagnosis and quickly realized it could be something much more than a chatbot—it could be a thought partner. That experience changed the trajectory of her career and inspired work that eventually landed her in the New York Times Modern Love column.We talk about the promise and responsibility of AI, why it should help us think instead of think for us, and how technology can create space for reflection during some of life's hardest moments. We also get into getting drunk in the Epilepsy Monitoring Unit, killing an embarrassing number of plants, and the strange ways a diagnosis can send your life in a direction you never saw coming.Check out Katie's writing!Substack -- A Voice Returned: avoicereturned.substack.comNew York Times Modern Love: "Learning to tell the truth to those I love"Huge shout to out the folks who believe in this podcast! Thanks sponsors Neurelis & SK life science and community partners Epilepsy Foundation of America, Danny Did Foundation, & Epilepsy Alliance America!
5. Turning Seizures Into Stand-Up with Jake Lambert
52:21||Season 11, Ep. 5It started with jokes on Twitter. Now comedian Jake Lambert is touring internationally with his stand-up show, The Sunshine Kid. Jake joins the podcast to talk about building a comedy career while living with epilepsy, surviving a schedule where nights are work and days are recovery, and why he started joking about seizures in his act.We get into epilepsy running in his family, varying audience responses to his epilepsy jokes, Alice in Wonderland Syndrome, and trying to explain a completely ridiculous aura to another person. We also discuss Jake's attempt to convince the BBC that epilepsy was more interesting than competitive slapping.Come for the comedy. Stay for the seizure stories, weird auras, and British accent.Subscribe to Jake's newsletter to stay up-to-date on his tour schedule: www.jakelambertcomedy.comShout to Neurelis, SK life science, Epilepsy Foundation, Danny Did Foundation, & Epilepsy Alliance America for believing in this podcast!
4. What If This Wearable Could Predict Your Seizures? with Chris Fitz and Truman Pierson
30:15||Season 11, Ep. 4What if there was something you could wear that gave you a heads up before a seizure? Truman Pierson and Chris Fitz are working on making that a reality. In this episode, they share their evolving device that uses EEG technology – without the wires OR the glue – to create a wearable device that predicts your seizures based on brain wave patterns. That means we could wear something the size of a paperclip, go about our lives, and get to safety before a seizure hits. They share how much warning time the device may be able to give before a seizure, when they hope people with epilepsy could actually get their hands on it, and what inspired them to create it.And there’s something you can help with – naming this device! Truman and Chris are looking to folks in the community for inspiration. Submit your ideas here: https://forms.gle/Gzc1SeTJ7GRQhTtT7Learn more about their work: https://www.thetaneurotech.com/Shout to Neurelis, SK life science, Epilepsy Foundation, Danny Did Foundation, & Epilepsy Alliance America for believing in this podcast!
3. Epilepsy Vent Session with Ivana Garcia, Alison Kukla, & Torie Robinson
01:06:44||Season 11, Ep. 3Calling your boyfriend by an ex’s name post-seizure. Avoiding “Bridget Jones-ing” your seizure moments. Forgetting conversations, faces, and entire vacations. (We all agree remembering names is out of the question).Ivana Garcia, Alison Kukla, and Torie Robinson join the podcast this week and get brutally honest about the weird, embarrassing, heartbreaking, and hilarious parts of living with epilepsy. (If nothing else, tune in for the sexy British, Argentinian – and Ohio – accents!)But underneath the chaos and laughter is something deeper: we get real about mental health, the isolation of not feeling understood, and why we became advocates in the first place.Come hang on the couches with us and tune into this messy, funny, vulnerable convo!Shout to Neurelis, SK life science, Epilepsy Foundation, Danny Did Foundation, & Epilepsy Alliance America for believing in this podcast!
2. Changing Epilepsy Care: When Patients, Moms, & Researchers Hang Out
01:15:08||Season 11, Ep. 2Put epilepsy powerhouses together for a weekend, and what happens? Real change. Tune in for convos about everything, like taking leave from work to do a med change, eclampsia-triggered seizures (The Pitt fans, you’ll recognize this one), loopholes when insurance won’t cover meds, and moms being told there are “no other options” for their kids.Researchers living with epilepsy themselves share what it’s like to study SUDEP and new treatments, plus the real deal on what clinical trials actually mean for people trying new epilepsy medications.Thank you to the Epilepsy Foundation of America for letting the podcast crash the Research Ambassador Program!Help keep "What the Ef" going! Subscribe and rate on whichever platform you listen to!Subscribe to YouTube: @WhatTheEfPodcast Follow on Insta: @whattheefpodcast Shout out to the folks who help keep things real in the epilepsy community! Thank you sponsors Neurelis & SK life science AND community partners Epilepsy Foundation of America, the Danny Did Foundation & Epilepsy Alliance America!Check out Matthew's TED Talk here: https://youtu.be/uLjnPYJiBFE?si=BENTwG_T1wRyz1qd
1. Real-Life "The Pitt": Docs with Epilepsy with Dr. Patrick Brown and Dr. Dan Snelgrove
01:09:54||Season 11, Ep. 1Two neurologists. Both have epilepsy. (Anyone watch “The Pitt”? Here’s the real life version.) Docs Dan and Patrick share their stories about growing up with epilepsy—like failing 9th grade and why your town's Baptist choir showed up after your first seizure. We talk about the awkward moments in med school, what it’s like to understand their patients’ perspective, and get into the weird guilt of not having seizures anymore.Tune in to meet docs you'll wanna grab a beer with and for the peak behind the curtain of living two sides of the epilepsy story.Help keep "What the Ef" going! Subscribe and rate on whichever platform you listen to!Subscribe to YouTube: @WhatTheEfPodcast Follow on Insta: @whattheefpodcast Shout out to the folks who help keep things real in the epilepsy community! Thank you sponsors Neurelis & SK life science AND community partners Epilepsy Foundation of America, the Danny Did Foundation & Epilepsy Alliance America!
8. Seizures Every Day, Every Night with Mia Randell
48:06||Season 10, Ep. 8Five years of memories: gone. Landis sits down with Mia, who lost most of high school to undiagnosed epilepsy—and no, the memories don’t come back if you show her photos (people keep trying). She still has seizures every day and every night—and yes, she’s still doing life anyway. Mia shares her vibrant approach to life when memory, sleep, and certainty are a luxury.Be sure to follow the podcast on Instagram, YouTube, & TikTok! @whattheefpodcast Shout out to the folks who help keep hope alive in the epilepsy community! Thank you sponsors Neurelis & SK life science AND community partners Epilepsy Foundation of America, Danny Did Foundation, & Epilepsy Alliance America!
7. How to Actually Sleep Better with Dr. Chris Allen (aka Sleep Dr. Chris)
44:13||Season 10, Ep. 7Are you a late-night scroller who swears it “helps you relax”? Yeah… this episode is for you. Landis sits down with neurologist and sleep specialist Dr. Chris Allen to break down how to actually build better sleep habits with epilepsy — not just why sleep matters, but what to do when your brain won’t shut off.Tune in for realistic tools that can help protect your sleep — and your seizure threshold — without turning into a monk or throwing your phone across the room.Be sure to follow the podcast on Instagram, YouTube, and TikTok! @whattheefpodcastCheck out more from Sleep Dr. Chris here: https://www.sleepdrchris.com/ Shout out to the folks who help keep hope alive in the epilepsy community! Thank you sponsors SK life science & Neurelis AND community partners Epilepsy Foundation of America, Danny Did Foundation, and Epilepsy Alliance America!