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Epilepsy Breakthroughs; · When Life Gives You Lemons

• 0:00
  palmi: Welcome to our podcast, When Life Gives You Lovements.
• 0:05
  palmi: I'm Kevin.
• 0:06
  Kevin: And I'm Palmy.
• 0:07
  Kevin: We consider ourselves disability advocates and intend to highlight some disability issues and things we find interesting that we frequently encounter when we're out and about.
• 0:18
  Kevin: Also, some history on disability that we find interesting.
• 0:22
  Kevin: This year we're going to include more of the interviews of the people that the disability affects.
• 0:30
  Kevin: We hope you enjoy it.
• 1:08
  palmi: I'm Kevin.
• 1:09
  Kevin: And I'm Homie.
• 1:11
  palmi: And today we're going to talk to you about epilepsy.
• 1:17
  palmi: Basically, some of the recently announced advances in the medication of and treatment of patients with epilepsy.
• 1:31
  Kevin: There's been some major changes in the last three years, and we're going to go over some of the changes, both um uh pharmaceutical and also some advancements as far as tracking and um identifying um epilepsy.
• 1:46
  Kevin: So let's get started.
• 1:55
  Kevin: Okay.
• 1:55
  Kevin: Today we are looking at the uh era period between 2023 and through September of 2026.
• 2:04
  Kevin: In these few short years, the field has undergone a fundamental uh shift, moving away from broad spectrum symptom management and towards the high-tech world of precise medicine.
• 2:16
  Kevin: We're talking about AI-driven diagnostics, gene-u-targeted interventions, and a proactive clinical approach that is changing lives.
• 2:28
  palmi: Okay, well let's start with the stin.
• 2:33
  palmi: Pharma, pharmacotherapy.
• 2:39
  palmi: That's the break.
• 2:40
  palmi: That's just a word that I don't know what it means.
• 2:44
  palmi: Uh pharma obviously has something to do with drugs.
• 2:51
  palmi: And therapy, of course, is treatment of whatever.
• 2:55
  palmi: So I'm assuming it's good fast in the treatment and right after that.
• 3:02
  palmi: They're talking about the mass in cabinet for epilepsy, has grown significantly.
• 3:09
  palmi: In April 2024, the approval of Liberat, which is a new drug.
• 3:24
  palmi: They specify what kind of drug here, but as much horizontal butcher.
• 3:30
  palmi: So I'm gonna skip over them.
• 3:32
  palmi: It's called a elongated non-invasive rescue therapy for patients 12 with older.
• 3:41
  Kevin: As we move into the 2026, the pipeline looked into more promising, looked more and more promising.
• 3:48
  Kevin: This past March phase three resulted results for, and again, this is a um medicine.
• 4:02
  Kevin: Call Tarner showed a medium of 53% reduction in focused focal seizures with a new drug application expected at the end of the month.
• 4:15
  Kevin: We've also seen incredible uh data from August 2026 regarding Zorvan, a therapy for Daravent syndrome that isn't just reducing seizures but showing durable cognitive improvements.
• 4:32
  Kevin: However, the path isn't always linear linear.
• 4:36
  Kevin: I can't ever say that.
• 4:37
  Kevin: What is that word?
• 4:37
  Kevin: Linear.
• 4:38
  Kevin: Leninear.
• 4:39
  Kevin: As of September 2026, the FDA FDA has issued a partial clinical hold on candidate BHV 7,000 due to specific melonic found founds, fines in road and rodent studies through existed trials, though existing trials continue.
• 5:01
  palmi: For those of you not familiar with the FDA, it stands for the Food and Drug Administration here in the United States.
• 5:12
  palmi: And of course, they take uh you have to have approval for the FDA to market your drugs.
• 5:21
  palmi: And the uh when they talk about air rodent trials, they're talking about an old studies, which is the first phase of clinical trials for new drugs.
• 5:44
  palmi: Beyond medications, the way we monitor and surgically treat epilepsy have been refined.
• 5:53
  palmi: A major study published in May 2026 confirmed that the RNS system, a brain responsive neural stimulation tool, led to a meeting 82% reduction in seizure frequency over three years.
• 6:19
  Kevin: Perhaps even more revolutionary is how we track these events.
• 6:23
  Kevin: As of July 2026, ultra-long-term scalp sub-scalp monitors like un EEG, sub-q are proving to be up to three times more accurate with patient than patient diaries.
• 6:40
  Kevin: This allows clinicians to titrate medications based on uh objective data rather than memory.
• 6:51
  Kevin: We are also seeing the rise of living drugs such as the NRTH-1001 neural cell therapy, which offers a potential non-resective alternative to traditional brain surgery.
• 7:08
  Kevin: And I think that means where they put it on on the head, right?
• 7:11
  Kevin: Rather than in the head?
• 7:13
  palmi: Under the skin.
• 7:14
  palmi: Under the skin.
• 7:19
  palmi: Skull.
• 7:19
  Kevin: Skull, yeah.
• 7:22
  palmi: Uh now let's talk about the AI detector for.
• 7:28
  palmi: Of course, that's provided by artificial intelligence.
• 7:33
  palmi: In early 2025, the Melgraph tool was released using neural networks despite brain lesions.
• 7:46
  palmi: The human radiologist often missed.
• 7:50
  palmi: This was followed in October 2025 by the pediatric patients.
• 8:00
  palmi: Nope, the epilepsy epilepsy detective, a tool that identifies tiny blueberry-sized lesions in pediatric patients with a 94% success rate.
• 8:18
  palmi: By June 2026, AI has even enabled us to potentially to identify genetic epilepsy to deter standard seizure-free EEG ratings.
• 8:41
  palmi: And basically that means that potentially you can eliminate the need for a long boring, stressful hospitals say that you have to capture a seizure on camera for.
• 8:57
  Kevin: Which was what the previous uh way of uh capturing a seizure was.
• 9:03
  Kevin: The most profound changes, however, have happened at the genetic level.
• 9:07
  Kevin: In July of 2026, researchers uh finally uh solved many unsolved epilepsies by linking them to complex gene pathways involving actin biology.
• 9:20
  Kevin: We are also seeing the success of ETX101 gene therapy.
• 9:27
  Kevin: Data from September 2026 shows that single administrative results in seizure reductions is up to 89% for children with the DARVAT uh syndrome.
• 9:40
  Kevin: We are even seeing an N of one trials where custom-made therapies are helping individuals, patients such as teenagers with the SCN2A mutant mutation who was unable to walk independently for the first time thanks to personalized therapy.
• 10:01
  palmi: All these advancements have led to a rewrite of the medical rulebook.
• 10:10
  palmi: New early surgical clinical guidelines released in April 2026 for infantile epilepsy now advocate for early surgical evaluation.
• 10:31
  palmi: The message is clear with that.
• 10:35
  palmi: Surgery should no longer be a last resort for brain-resistant cases.
• 10:43
  palmi: It should be an early consideration to protect the developing brain.
• 10:50
  Kevin: For drug-resistant cases, just so you know.
• 10:54
  Kevin: As we look back at the progress between 2023 and 2026, we see a field that has completely revitalized the convergence of AI diagnostics, long-term monitoring, and gene-specific therapies has moved us closer to the ultimate goal.
• 11:12
  Kevin: Treatments that don't just suppress seizures but actually modify the underlying disease.
• 11:19
  Kevin: We are entering an era where diagnosis of epilepsy is no longer just about management.
• 11:25
  Kevin: It's about the search for precise personalized cures.
• 11:31
  Kevin: And a lot of this, I think, is driven by the advancement of AI.
• 11:36
  Kevin: I think so.
• 11:37
  Kevin: That's what gives me hope for um Eurataxia.
• 11:40
  palmi: Well, one thing that uh is for sure the last thing I knew about epilepsy is there's one drug and one surgical option.
• 11:53
  palmi: So let us know on the Facebook page or by email.
• 12:01
  palmi: And we're not interested in your name if you don't want to give it.
• 12:06
  palmi: But let us know if you've been affected by epilepsy and how the uh newer drugs and new treatments have helped or hindered you.
• 12:21
  palmi: Right.
• 12:21
  Kevin: We'd love to interview you.
• 12:23
  palmi: Yeah, because we didn't know very much about epilepsy at all, much less about these this latest explosion of knowledge on the topic.
• 12:35
  Kevin: Yeah, gives us great hope for other diseases.
• 12:38
  palmi: Yeah, I think we said this before a lot of times, uh the medication be has side effects, and the side effects actually will help other diseases or conditions.
• 12:53
  palmi: Yeah.
• 12:54
  Kevin: I was watching the Emmys um the other night, um, and um Michael Fox, Mike, Mike, Michael Fox was on there and he said that um the cure for um um Parkinson's disease, they are minutes away, is what he said, um, away from a cure.
• 13:16
  Kevin: And so it wasn't if it wasn't, you know, he he said he wasn't his goal was not to survive it, it was to find a cure for for someone else to survive it.
• 13:27
  Kevin: So and he's credited a lot to AI also as far as the cure for MS or um for Parkinson's disease.
• 13:38
  palmi: Well, the thing about AI is they can use AI.
• 13:43
  palmi: It's like a uh I guess you may have heard the uh theory about if you have an infinite number of monkeys and an infinite uh supply of typewriters, eventually one of them will like, right?
• 14:04
  palmi: A classic, like uh War and Peace.
• 14:08
  palmi: Well, AI is kind of like that.
• 14:11
  palmi: It exists just to be used as a tool, and it will do long-term things like that, not evidently, obviously, but uh the thing that might have taken us years to accomplish with the limitations of you know shift work and all that stuff, uh, they can accomplish in a better months.
• 14:42
  palmi: And uh AI is to the point where AI, the mainframe, doesn't really need to be involved.
• 14:53
  palmi: It can just input data to its mainframe or relay it to a uh portal it has set up somewhere and it can use that data.
• 15:06
  palmi: It doesn't have to be involved in the data collection necessarily.
• 15:15
  palmi: So that's about it for epilepsy, folks.
• 15:20
  palmi: Don't forget you can contact us via our website at www.whenlifegivesulemons.net.
• 15:32
  palmi: You can either send us email or fan mail.
• 15:37
  palmi: The instructions are right there.
• 15:41
  palmi: Uh or you can uh like to reach out to us on Facebook.
• 15:47
  palmi: We have a Facebook fan page with the same name as our podcast, when life gives you lovens.
• 15:57
  palmi: I also hang out on decks.
• 16:00
  palmi: Uh, you can reach me.
• 16:03
  palmi: I use the hello when life gives you lovens.
• 16:08
  palmi: And that's about all we have for today, folks.
• 16:25
  palmi: See you later, folks.