What the Ef?!

Changing Epilepsy Care: When Patients, Moms, & Researchers Hang Out

1 h 15 min · 12. maj 2026
episode Changing Epilepsy Care: When Patients, Moms, & Researchers Hang Out cover

Description

Put 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  [https://studio.youtube.com/channel/UCYLkbgKUgppiVrVmE-ABEsw] Follow on Insta: @whattheefpodcast [https://www.instagram.com/whattheefpodcast/] Shout out to the folks who help keep things real in the epilepsy community! Thank you sponsors Neurelis [https://valtoco.com/?utm_source=landi&utm_medium=display&utm_content=0_0_vco_dtc_landi_con-spo_wha-the-ef-spo_con_epi-pod_flat_sis_0-v_crs_ban_1x1&utm_term=us-prc-24-00129-v2_ban_sta_300x250_non_dtc_tak-cha_26-06-05&utm_campaign=2026_nic_vco_dtc&dclid=CL3E1OSIoJQDFWX9fgkdfyMtbA&gad_source=7&gad_campaignid=23350486950] & 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 [https://youtu.be/uLjnPYJiBFE?si=BENTwG_T1wRyz1qd] ---------------------------------------- Hosted on Acast. See acast.com/privacy [https://acast.com/privacy] for more information.

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All episodes

89 episodes

episode Turning Seizures Into Stand-Up with Jake Lambert artwork

Turning Seizures Into Stand-Up with Jake Lambert

It 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.com [https://www.jakelambertcomedy.com/] Shout to Neurelis [https://valtoco.com/?utm_source=landi&utm_medium=display&utm_content=0_0_vco_dtc_landi_con-spo_wha-the-ef-spo_con_epi-pod_flat_sis_0-v_crs_ban_1x1&utm_term=us-prc-24-00129-v2_ban_sta_300x250_non_dtc_tak-cha_26-06-05&utm_campaign=2026_nic_vco_dtc&dclid=CPPCyev_1JQDFYzz9QId4U44GQ&gad_source=7&gad_campaignid=23350486950], SK life science, Epilepsy Foundation, Danny Did Foundation, & Epilepsy Alliance America for believing in this podcast! ---------------------------------------- Hosted on Acast. See acast.com/privacy [https://acast.com/privacy] for more information.

2. juni 202652 min
episode What If This Wearable Could Predict Your Seizures? with Chris Fitz and Truman Pierson artwork

What If This Wearable Could Predict Your Seizures? with Chris Fitz and Truman Pierson

What 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/Gzc1SeTJ7GRQhTtT7 [https://forms.gle/Gzc1SeTJ7GRQhTtT7] Learn more about their work: https://www.thetaneurotech.com/ [https://www.thetaneurotech.com/] Shout to Neurelis [https://valtoco.com/?utm_source=landi&utm_medium=display&utm_content=0_0_vco_dtc_landi_con-spo_wha-the-ef-spo_con_epi-pod_flat_sis_0-v_crs_ban_1x1&utm_term=us-prc-24-00129-v2_ban_sta_300x250_non_dtc_tak-cha_26-06-05&utm_campaign=2026_nic_vco_dtc&dclid=CPPCyev_1JQDFYzz9QId4U44GQ&gad_source=7&gad_campaignid=23350486950], SK life science, Epilepsy Foundation, Danny Did Foundation, & Epilepsy Alliance America for believing in this podcast! ---------------------------------------- Hosted on Acast. See acast.com/privacy [https://acast.com/privacy] for more information.

26. maj 202630 min
episode Epilepsy Vent Session with Ivana Garcia, Alison Kukla, & Torie Robinson artwork

Epilepsy Vent Session with Ivana Garcia, Alison Kukla, & Torie Robinson

Calling 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 [https://valtoco.com/?utm_source=landi&utm_medium=display&utm_content=0_0_vco_dtc_landi_con-spo_wha-the-ef-spo_con_epi-pod_flat_sis_0-v_crs_ban_1x1&utm_term=us-prc-24-00129-v2_ban_sta_300x250_non_dtc_tak-cha_26-06-05&utm_campaign=2026_nic_vco_dtc&dclid=CPS874v3u5QDFau0pgQdxWgSmg&gad_source=7&gad_campaignid=23350486950], SK life science, Epilepsy Foundation, Danny Did Foundation, & Epilepsy Alliance America for believing in this podcast! ---------------------------------------- Hosted on Acast. See acast.com/privacy [https://acast.com/privacy] for more information.

19. maj 20261 h 6 min
episode Changing Epilepsy Care: When Patients, Moms, & Researchers Hang Out artwork

Changing Epilepsy Care: When Patients, Moms, & Researchers Hang Out

Put 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  [https://studio.youtube.com/channel/UCYLkbgKUgppiVrVmE-ABEsw] Follow on Insta: @whattheefpodcast [https://www.instagram.com/whattheefpodcast/] Shout out to the folks who help keep things real in the epilepsy community! Thank you sponsors Neurelis [https://valtoco.com/?utm_source=landi&utm_medium=display&utm_content=0_0_vco_dtc_landi_con-spo_wha-the-ef-spo_con_epi-pod_flat_sis_0-v_crs_ban_1x1&utm_term=us-prc-24-00129-v2_ban_sta_300x250_non_dtc_tak-cha_26-06-05&utm_campaign=2026_nic_vco_dtc&dclid=CL3E1OSIoJQDFWX9fgkdfyMtbA&gad_source=7&gad_campaignid=23350486950] & 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 [https://youtu.be/uLjnPYJiBFE?si=BENTwG_T1wRyz1qd] ---------------------------------------- Hosted on Acast. See acast.com/privacy [https://acast.com/privacy] for more information.

12. maj 20261 h 15 min
episode Real-Life "The Pitt": Docs with Epilepsy with Dr. Patrick Brown and Dr. Dan Snelgrove artwork

Real-Life "The Pitt": Docs with Epilepsy with Dr. Patrick Brown and Dr. Dan Snelgrove

Two 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  [https://studio.youtube.com/channel/UCYLkbgKUgppiVrVmE-ABEsw] Follow on Insta: @whattheefpodcast [https://www.instagram.com/whattheefpodcast/] Shout out to the folks who help keep things real in the epilepsy community! Thank you sponsors Neurelis [https://valtoco.com/?utm_source=landi&utm_medium=display&utm_content=0_0_vco_dtc_landi_con-spo_wha-the-ef-spo_con_epi-pod_flat_sis_0-v_crs_ban_1x1&utm_term=us-prc-24-00129-v2_ban_sta_300x250_non_dtc_tak-cha_26-06-05&utm_campaign=2026_nic_vco_dtc&dclid=CL3E1OSIoJQDFWX9fgkdfyMtbA&gad_source=7&gad_campaignid=23350486950] & SK life science AND community partners Epilepsy Foundation of America, the Danny Did Foundation & Epilepsy Alliance America! ---------------------------------------- Hosted on Acast. See acast.com/privacy [https://acast.com/privacy] for more information.

5. maj 20261 h 9 min