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What makes a character so compelling that readers will forgive almost anything about the plot? How do you move beyond vague flaws and generic descriptions to create people who feel pulled from real life? In this solo episode, I share 15 actionable tips for writing deep characters, curated from past interviews on the podcast. In the intro, thoughts from London Book Fair [Instagram reel @jfpennauthor; Publishing Perspectives; Audible; Spotify]; Insights from a 7-figure author business [BookBub]. This show is supported by my Patrons. Join my Community and get articles, discounts, and extra audio and video tutorials on writing craft, author business, and AI tools, at Patreon.com/thecreativepenn This episode has been created from previous episodes of The Creative Penn Podcast, curated by Joanna Penn, as well as chapters from How to Write a Novel: From Idea to Book. Links to the individual episodes are included in the transcript below. In this episode: Master the ‘Believe, Care, Invest' trifecta, how to hook readers on the very first page Define the Dramatic Question: Who is your character when the chips are down? Absolute specificity. Why “she's controlling” isn't good enough Understand the Heroine's Journey, strength through connection, not solo action Use ‘Metaphor Families' to anchor dialogue and give every character a distinctive voice Find the Diagnostic Detail, the moments that prove a character is real Writing pain onto the page without writing memoir Write diverse characters as real people, not stereotypes or plot devices Give your protagonist a morally neutral ‘hero' status. Compelling beats likeable. Build vibrant side characters for series longevity and spin-off potential Use voice as a rhythmic tool Link character and plot until they're inseparable Why discovery writers can write out of order and still build deep character Find the sensory details that make characters live and breathe More help with how to write fiction here, or in my book, How to Write a Novel. Writing Characters: 15 Tips for Writing Deep Character in Your Fiction In today's episode, I'm sharing fifteen tips for writing deep characters, synthesised from some of the most insightful interviews on The Creative Penn Podcast over the past few years, combined with what I've learned across more than forty books of my own. I'll be referencing episodes with Matt Bird, Will Storr, Gail Carriger, Barbara Nickless, and Sarah Elisabeth Sawyer. I'll also draw on my own book, How to Write a Novel, which covers these fundamentals in detail. Whether you're writing your first novel or your fiftieth, whether you're a plotter or a discovery writer like me, these tips will help you create characters that readers believe in, care about, and invest in—and keep coming back for more. Let's get into it. 1. Master the ‘Believe, Care, Invest' Trifecta When I spoke with Matt Bird on episode 624, he laid out the three things you need to achieve on the very first page of your book or in the first ten minutes of a film. He calls it “Believe, Care, and Invest.” First, the reader must believe the character is a real person, somehow proving they are not a cardboard imitation of a human being, not just a generic type walking through a generic plot. Second, the reader must care about the character's circumstances. And third, the reader must invest in the character's ability to solve the story's central problem. Matt used The Hunger Games as his primary example, and it's brilliant. On the very first page, we believe Katniss's voice. Suzanne Collins writes in first person with a staccato rhythm—lots of periods, short declarative sentences—that immediately grounds us in a survivalist mentality. We care because Katniss is starving. She's protecting her little sister. And we invest because she is out there bow hunting, which Matt pointed out is one of the most badass things a character can do. She even kills a lynx two pages in and sells the pelt. We invest in her resourcefulness and grit before the plot has even begun. Matt was very clear that this has nothing to do with the character being “likable.” He said his subtitle, Writing a Hero Anyone Will Love, doesn't mean the character has to be a good person. He described “hero” as both gender-neutral and morally neutral. A hero can be totally evil or totally good. What matters is that we believe, care, and invest. He demonstrated this beautifully by breaking down the first ten minutes of WeCrashed, where the characters of Adam and Rebekah Neumann are absolutely not likable, but we are completely hooked. Adam steals his neighbour's Chinese food through a carefully orchestrated con involving an imaginary beer. It's not admirable behaviour, but the tradecraft involved, as Matt put it—using a term from spy movies—makes us invest in him. We see a character trying to solve the big problem of his life, which is that he's poor and wants to be rich, and we want to see if he can pull it off. Actionable step: Go to the first page of your current work in progress. Does it achieve all three? Does the reader believe this is a real person with a distinctive voice? Do they care about the character's circumstances? And do they invest in the character's ability to handle what's coming? If even one of those three is missing, that's your revision priority. 2. Define the Dramatic Question: Who Are They Really? Will Storr, author of The Science of Storytelling, came on episode 490 and gave one of the most powerful frameworks I've ever heard for character-driven fiction. He explained that the human brain evolved language primarily to swap social information—in other words, to gossip. We are wired to monitor other people, to ask the question: who is this person when the chips are down? That's what Will calls the Dramatic Question, and it's what he believes lies at the heart of all compelling storytelling. It's not a question about plot. It's a question about the character's soul. And every scene in your novel should force the character to answer it. His example of Lawrence of Arabia is unforgettable. The Dramatic Question for the entire film is: who are you, Lawrence? Are you ordinary or are you extraordinary? At the beginning, Lawrence is a cocky, rebellious young soldier who believes his rebelliousness makes him superior. Every iconic scene in that three-hour film tests that belief. Sometimes Lawrence acts as though he truly is extraordinary—leading the Arabs into battle, being hailed as a god—and sometimes the world strips him bare and he sees himself as ordinary. Because it's a tragedy, he never overcomes his flaw. He doubles down on his belief that he's extraordinary until he becomes monstrous, culminating in that iconic scene where he lifts a bloody dagger and sees his own reflection with horror. Will also used Jaws to demonstrate how this works in a pure action thriller. Brody's dramatic question is simple: are you going to be old Brody who is terrified of the water, or new Brody who can overcome that fear? Every scene where the shark appears is really asking that question. And the last moment of the film isn't the shark blowing up. It's Brody swimming back through the water, saying he used to be scared of the water and he can't imagine why. Actionable step: Write down the Dramatic Question for your protagonist in a single sentence. Is it “Are you ordinary or extraordinary?” or “Are you brave enough to love again?” or “Will you sacrifice your principles for survival?” If you can't answer this with specificity, your character might still be a sketch rather than a person. 3. Get rid of Vague Flaws, and use Absolute Specificity This was one of Will Storr's most important points. He said that vague thinking about characters is really the enemy. When he teaches workshops and asks writers to describe their character's flaw, most of them say something like “they're very controlling.” And Will's response is: that's not good enough. Everyone is controlling. How are they controlling? What's the specific mechanism? He gave the example of a profile he read of Theresa May during the UK's Brexit chaos. Someone who knew her said that Theresa May's problem was that she always thinks she's the only adult in every room she goes into. Will said that stopped him in his tracks because it's so precise. If you define a character with that level of specificity, you can take them and put them in any genre, any situation—a spaceship, a Victorian drawing room, a school playground—and you will know exactly how they're going to behave. The same applies to Arthur Miller's Willy Loman in Death of a Salesman, as Will described it: a man who believes absolutely in capitalistic success and the idea that when you die, you're going to be weighed on a scale, just as God weighs you for sin, but now you're weighed for success. That's not a vague flaw. That's a worldview you can drop into any story and watch it combust. Will made another counterintuitive point that I found really valuable: writers often think that piling on multiple traits will create a complex character, but the opposite is true. Starting with one highly specific flaw and running it through the demands of a relentless plot is what generates complexity. You end up with a far more nuanced, original character than if you'd started with a laundry list of vague attributes. Actionable step: Take your protagonist's flaw and pressure-test it. Is it specific enough that you could place this character in any situation and predict their behaviour? If you're stuck at “she's stubborn” or “he's insecure,” keep pushing. What kind of stubborn? What kind of insecure? Find the diagnostic sentence—the Theresa May level of precision. 4. Understand the Heroine's Journey: Strength Through Connection Gail Carriger came on episode 550 to discuss her nonfiction book, The Heroine's Journey, and it completely reframed how I think about some of my own fiction. Gail explained that the core difference between the Hero's Journey and the Heroine's Journey comes down to how strength and victory are defined. The Hero's Journey is about strength through solo action. The hero must be continually isolated to get stronger. He goes out of civilisation, faces strife alone, and achieves victory through physical prowess and self-actualisation. The Heroine's Journey is the opposite. The heroine achieves her goals by activating a network. She's a delegator, a general. She identifies where she can't do something alone, finds the people who can help, and portions out the work for mutual gain. Gail put it simply: the heroine is very good at asking for help, which our culture tends to devalue but which is actually a powerful form of strength. Crucially, Gail stressed that gender is irrelevant to which journey you're writing. Her go-to examples are striking: the recent Wonder Woman film is practically a beat-for-beat hero's journey—Gilgamesh on screen, as Gail described it. Meanwhile, Harry Potter, both the first book and the series as a whole, is a classic heroine's journey. Harry's power comes from his network—Dumbledore's Army, the Order of the Phoenix, his friendships with Ron and Hermione. He doesn't defeat Voldemort alone. He defeats Voldemort because of love and connection. This distinction has real practical consequences for writers. If you're writing a hero's journey and you hit writer's block, Gail said, the solution is usually to isolate your hero further and pile on more strife. But if you're writing a heroine's journey, the solution is probably to throw a new character into the scene—someone who has advice to offer or a skill the heroine lacks. The actual solutions to writer's block are different depending on which narrative you're writing. As I reflected on my own work, I realised that my ARKANE thriller protagonist, Morgan Sierra, follows a hero's journey—she's a solo operative, a lone wolf like Jack Reacher or James Bond. But my Mapwalker fantasy series follows a heroine's journey, with Sienna and her group of friends working together. I hadn't consciously chosen those paths; the stories led me there. But understanding the framework helps me write more intentionally now. Actionable step: Identify which journey your protagonist is on. Does your character gain strength by being alone (hero) or by building connections (heroine)? This will inform every plot decision you make, from how they face obstacles to how your story ends. 5. Use ‘Metaphor Families' to Anchor Dialogue and Voice One of the most practical techniques Matt Bird shared on episode 624 is the idea of assigning each character a “metaphor family”—a specific well of language that they draw from. This gives each character a distinctive voice that goes beyond accent or dialect. Matt explained how in The Wire, one of the most beloved TV shows of all time, every character has a different metaphor family. What struck him was that Omar, this iconic character, never utters a single curse word in the entire series. His metaphor family is pirate. He talks about parlays, uses language that feels like it belongs in Pirates of the Caribbean, and it creates this incredible ironic counterpoint against his urban setting. It tells us immediately that this is a character who sees himself in a tradition of people that doesn't match his immediate surroundings. Matt also referenced the UK version of The Office, where Gareth works at a paper company but aspires to the military. So all of his language is drawn from a military metaphor family. He doesn't talk about filing and photocopying; he talks about tactics and discipline and being on the front line. This tells us that the character has a life and dreams beyond the immediate scene—and it's the gap between aspiration and reality that makes him both funny and believable. He pointed out that a metaphor family sometimes comes from a character's background, but it's often more interesting when it comes from their aspirations. What does your character want to be? What world do they fantasise about inhabiting? That's where their language should come from. In Star Wars, Obi-Wan Kenobi is a spiritual hermit, but his metaphor family is military. He uses the language of generals and commanders, and that ironic counterpoint is part of what makes him feel so rich. Actionable step: Assign each of your main characters a metaphor family. It could be based on their job, their background, or—more interestingly—their secret aspirations. Then go through your dialogue and make sure each character is consistently drawing from that well of language. If two characters sound the same when you strip away the dialogue tags, this is the fix. 6. Find the Diagnostic Detail: The Diagonal Toast Avoid clichéd character tags—the random scar, the eye patch, the mysterious limp—unless they serve a deep narrative purpose. Matt Bird on episode 624 was very funny about this: he pointed out that Nick Fury, Odin, and eventually Thor all have eye patches in the Marvel Cinematic Universe. Eye patches are done, he said. You cannot do eye patches anymore. Instead, look for what I'm calling the “diagonal toast” detail, after a scene Matt described from Captain Marvel. In the film, Captain Marvel is trying to determine whether Nick Fury is who he says he is. She asks him to prove he isn't a shapeshifting alien. Fury shares biographical details—his history, his mother—but then she pushes further and says, name one more thing you couldn't possibly have made up about yourself. And Fury says: if toast is cut diagonally, I can't eat it. Matt said that detail is gold for a writer because it feels pulled from a real life. You can pull it from your own life and gift it to your characters, and the reader can tell it's not manufactured. He gave another example from The Sopranos: Tony Soprano's mother won't answer the phone after dark. The show's creator, David Chase, confirmed on the DVD commentary that this came from his own mother, who genuinely would not answer the phone after dark and couldn't explain why. Matt's practical advice was to keep a journal. Write down the strange, specific things that people do or say. Mine your own life for those hyper-specific details. You just need one per book. In my own writing, I've used this approach. In my ARKANE thrillers, my character Morgan Sierra has always been Angelina Jolie in my mind—specifically Jolie in Lara Croft or Mr and Mrs Smith. And Blake Daniel in my crime thriller series was based on Jesse Williams from Grey's Anatomy. I paste pictures of actors into my Scrivener projects. It helps with visuals, but also with the sense of the character, their energy and physicality. But visual details only take you so far. It's the behavioural quirks—the diagonal toast moments—that make a character feel genuinely alive. That said, physical character tags can work brilliantly when they serve the story. As I discuss in How to Write a Novel, Robert Galbraith's Cormoran Strike is an amputee, and his pain and the physical challenges of his prosthesis are a key part of every story—it's not a cosmetic detail, it's woven into the action and the character's psychology. My character Blake Daniel always wears gloves to cover the scars on his hands, which provides an angle into his wounded past as well as a visual cue for the reader. And of course, Harry Potter's lightning-shaped scar isn't just a mark—it's a direct connection to his nemesis and the mythology of the entire series. The rule of thumb is: if the tag tells us something about the character's interior life or connects to the plot, it's earning its place. If it's just there to make the character visually distinctive, it's probably a crutch. Game of Thrones takes character tags further with the family houses, each with their own mottos and sigils. The Starks say “Winter is coming” and their sigil is a dire wolf. Those aren't just labels—they're worldview made visible. Actionable step: Start a “diagonal toast” notebook. Every time you notice something strange and specific about someone's behaviour—something that feels too real to be made up—write it down. Then gift it to a character who needs more texture. 7. Displace Your Own Trauma into the Work Barbara Nickless shared something deeply personal on episode 732 that fundamentally changed how I think about putting pain onto the page. While starting At First Light, the first book in her Dr. Evan Wilding series, she lost her son to epilepsy—something called SUDEP, Sudden Unexplained Death in Epilepsy. One day he was there, and the next day he was gone. Barbara said that writing helped her cope with the trauma, that doing a deep dive into Old English literature and the Viking Age for the book's research became a lifeline. But here's what's important: she didn't give Dr. Evan Wilding her exact trauma. Evan Wilding is four feet five inches, and Barbara described how he has to walk through a world that won't adjust to him. That's its own form of learning to cope when circumstances are beyond your control. She displaced her genuine grief into the character's different but parallel struggle. When I asked her about the difference between writing for therapy and writing for an audience, she drew on her experience teaching creative writing to veterans through a collaboration between the US Department of Defense and the National Endowment for the Arts. She said she's found that she can pour her heartache into her characters and process it through them, even when writing professionally, and that the genuine emotion is what touches readers. We've all been through our own losses and griefs, so seeing how a character copes can be deeply meaningful. I've always found that putting my own pain onto the page is the most direct way to connect with a reader's soul. My character Morgan Sierra's musings on religion and the supernatural are often my own. Her restlessness, her fascination with the darker edges of faith—those come from me. But her Krav Maga fighting skills and her ability to kill the bad guys are definitely her own. That gap between what's mine and what's hers is where the fiction lives. Barbara also said something on that episode that I wrote down and stuck on my wall. She said the act of producing itself is a balm to the soul. I've been thinking about that ever since. On my own wall, I have “Measure your life by what you create.” Different words, same truth. Actionable step: If you're carrying something heavy—grief, anger, fear, regret—consider how you might displace it into a character's different but emotionally parallel struggle. Don't copy your exact situation; transform it. The emotion will be genuine, and the reader will feel it. 8. Write Diverse Characters as Real People When I spoke with Sarah Elisabeth Sawyer on episode 673—Sarah is Choctaw and a historical fiction author honoured by the Smithsonian's National Museum of the American Indian—she offered a perspective that every fiction writer needs to hear. The key message was to move away from stereotypes. Don't write your American Indian character as the “Wise Guide” who exists solely to dispense mystic wisdom to the white protagonist. Don't limit diverse characters to historical settings, as though they only exist in the past. Place them in normal, contemporary roles. Your spaceship captain, your forensic scientist, your small-town baker—any of them can be American Indian, or Nigerian, or Japanese, and their heritage should be a lived-in part of their identity, not the sole reason they exist in the story. I write international thrillers and dark fantasy, and my fiction is populated with characters from all over the world. I have a multi-cultural family and I've lived in many places and travelled widely, so I've met, worked with, and had relationships with people from different cultures. I find story ideas through travel, and if I set my books in a certain place, then the story is naturally populated with the people who live there. As I discuss in my book, How to Write a Novel, the world is a diverse place, so your fiction needs to be populated with all kinds of people. If I only populated my fiction with characters like me, they would be boring novels. There are many dimensions of difference—race, nationality, sex, age, body type, ability, religion, gender, sexual orientation, socio-economic status, class, culture, education level—and even then, don't assume that similar types of people think the same way. Some authors worry they will make mistakes. We live in a time of outrage, and some authors have been criticised for writing outside their own experience. So is it too dangerous to try? Of course not. The media amplifies outliers, and most authors include diverse characters in every book without causing offence because they work hard to get it right. It's about awareness, research, and intent. Actionable step: Audit the cast of your current work in progress. Have you written a mono-cultural perspective for all of them? If so, consider who could bring a different background, perspective, or set of cultural specifics to the story. Not as a token addition, but as a real person with a real life. 9. Respect Tribal and Cultural Specificity Sarah Elisabeth Sawyer on episode 673 was emphatic about one thing: never treat diverse groups as monolithic. If you're writing a Native American character, you must research the specific nation. Choctaw is not Navajo, just as British is not French. Sarah described the distinct cultural markers of the Choctaw people—the diamond pattern you'll see on traditional shirts and dresses, which represents the diamondback rattlesnake. They have distinct dances and songs. She said that if she saw someone in traditional dress at a distance, she would know whether they were Choctaw based on what they were wearing. She encouraged writers who want to write specifically about a nation to get to know those people. Go to events, go to a powwow, learn about the individual culture. She noted that a big misconception is that American Indians exist only in the past—she stressed that they are still here, still living their cultures, and fiction should reflect that present reality. I took a similar approach when writing Destroyer of Worlds, which is set mostly in India. I read books about Hindu myth, watched documentaries about the sadhus, and had one of my Indian readers from Mumbai check my cultural references. For Risen Gods, set in New Zealand with a young Maori protagonist, I studied books about Maori mythology and fiction by Maori authors, and had a male Maori reader check for cultural issues. Research is simply an act of empathy. The practical takeaway is this: if you're going to include a character from a specific cultural background, do the work. Use specific cultural details rather than generic signifiers. Sarah talked about how even she fell into stereotypes when she was first writing, until her mother pointed them out. If someone from within a culture can fall into those traps, the rest of us certainly can. Do the research, try your best, ask for help, and apologise if you need to. Actionable step: If you're writing a character from a specific culture, identify three to five sensory or behavioural details that are particular to that culture—not the generic version, but the real, researched, lived-in version. Consider hiring a sensitivity reader from that community to check your work. 10. Give Your Protagonist a Morally Neutral ‘Hero' Status Matt Bird was clear about this on episode 624: the word “hero” simply means the protagonist, the person we follow through the story. It's a functional role, not a moral label. We don't have to like them. We don't even have to root for their goals in a moral sense. We just have to find them compelling enough to invest our attention in their problem-solving. Think of Succession, where every member of the Roy family is varying degrees of awful, and yet the show was utterly compelling. Or WeCrashed, where Adam Neumann is a narcissistic con artist, but we can't look away because he's trying to solve the enormous problem of building an empire from nothing, and the tradecraft he employs is fascinating. As I wrote in How to Write a Novel, readers must want to spend time with your characters. They don't have to be lovable or even likable—that will depend on your genre and story choices—but they have to be captivating enough that we want to spend time with them. A character who is trying to solve a massive problem will naturally draw investment from the audience, even if we wouldn't want to have tea with them. Will Storr extended this idea by pointing out that the audience will actually root for a character to solve their problem even if the audience doesn't actually want the character's goal to be achieved in the real world. We don't really want more billionaires, but we invested in Adam Neumann's rise because that was the problem the story posed, and our brains are wired to invest in problem-solving. This connects to something deeper: what does your character want, and why? As I explore in How to Write a Novel, desire operates on multiple levels. Take a character like Phil, who joins the military during wartime. On the surface, she wants to serve her country. But she also wants to escape her dead-end town and learn new skills. Deeper still, her father and grandfather served, and by joining up, she hopes to finally earn their respect. And perhaps deepest of all, her father died on a mission under mysterious circumstances, and she wants to find out what happened from the inside. That layering of motivation is what turns a flat character into a three-dimensional one. The audience doesn't need to be told all of this explicitly. It can emerge through action, dialogue, and the choices the character makes under pressure. But you, the writer, need to know it. You need to know what your character really wants deep down, because that desire—more than any external plot device—is what drives the story forward. And your antagonist needs the same depth. They also want something, often diametrically opposed to your protagonist, and they need a reason that makes sense to them. In my ARKANE thriller Tree of Life, my antagonist is the heiress of a Brazilian mining empire who wants to restore the Earth to its original state to atone for the destruction caused by her father's company. She's part of a radical ecological group who believe the only way to restore Nature is to end all human life. It's extreme, but in an era of climate change, it's a motivation readers can understand—even if they disagree with the solution. Actionable step: If you're struggling to make a morally grey character work, make sure their problem is big enough and their methods are specific and interesting enough that we invest in the how, even if we're ambivalent about the what. 11. Build Vibrant Side Characters Gail Carriger made a point on episode 550 that was equal parts craft advice and business strategy. In a Heroine's Journey model, side characters aren't just fodder to be killed off to motivate the hero. They form a network. And because you don't have to kill them—unlike in a hero's journey, where allies are often betrayed or removed so the hero can be further isolated—you can pick up those side characters and give them their own books. Gail said this creates a really voracious reader base. You write one series with vivid side characters, and then readers fall in love with those side characters and want their stories. So you write spin-offs. The romance genre does this brilliantly—think of the Bridgerton books, where each sibling gets their own novel. The side character in one book becomes the protagonist in the next. Barbara Nickless experienced this firsthand with her Dr. Evan Wilding series. She has River Wilding, Evan's adventurous brother, and Diana, the axe-throwing research assistant, and her editor has already expressed interest in a spin-off series with those characters. Barbara described creating characters she wants to spend time with, or characters who give her nightmares but also intrigue her. That's the dual test: are they interesting enough for you to write, and interesting enough for readers to demand more? As I wrote in How to Write a Novel, characters that span series can deepen the reader's relationship with them as you expand their backstory into new plots. Readers will remember the character more than the plot or the book title, and look forward to the next instalment because they want more time with those people. British crime author Angela Marsons described it as readers feeling like returning to her characters is like putting on a pair of old slippers. Actionable step: Look at your supporting cast. Is there a side character who is vivid enough to carry their own story? If not, what could you add—a specific hobby, a distinct voice, a compelling backstory—that would make readers want more of them? 12. Use Voice as a Rhythmic Tool Voice is one of the most important elements of novel writing, and Matt Bird helped me think about it in a technical, mechanical way that I found really useful. He pointed out that the ratio of periods to commas defines a character's internal reality. A staccato rhythm—lots of periods, short sentences—suggests a character who is certain, grounded, or perhaps survivalist and traumatised. Katniss in The Hunger Games has a period-heavy voice. She's in survival mode. She doesn't have time for complexity or qualification. A flowing, comma-heavy style suggests someone more academic, more nuanced, or possibly more scattered and manipulative. The character who qualifies everything, who adds sub-clauses and digressions, is a different kind of person from the character who speaks in declarations. This is something you can actually measure. Pull up a passage of your character's dialogue or internal monologue and count the periods versus the commas. If the rhythm doesn't match who the character is supposed to be, you've found a mismatch you can fix. Sentence length is the heartbeat of your character's persona. And voice extends beyond rhythm to the words themselves. As I discussed in the metaphor families tip, each character should draw from a distinctive well of language. But voice also encompasses their relationship to silence. Some characters talk around the thing they mean; others say it straight. Some are self-deprecating; others are blunt to the point of rudeness. All of these choices are character choices, not just style choices. I find it useful to read my dialogue aloud—and not just to check for naturalness, but to hear whether each character sounds distinct. If you could swap dialogue lines between two characters and nobody would notice, you have a voice problem. One practical test: cover the dialogue tags and see if you can tell who's speaking from the words alone. Actionable step: Choose a key passage from your protagonist's point of view and read it aloud. Does the rhythm match the character? A soldier under fire should not sound like a philosophy professor at a wine tasting. Adjust the ratio of periods to commas until the voice feels right. 13. Link Character and Plot Until They're Inseparable Will Storr made the case on episode 490 that the number one problem he sees in the writing he encounters—in workshops, in submissions, even in published books—is that the characters and the plots are unconnected. There's a story happening, and there are people in it, but the story isn't a product of who those people are. He said a story should be like life. In our lives, the plots are intimately connected to who we are as characters. The goals we pursue, the obstacles we face, the same problems that keep recurring—these are products of our personalities, our flaws, our specific ways of being in the world. His framework is that your plot should be designed specifically to plot against your character. You've got a character with a particular flaw; the plot exists to test that flaw over and over until the character either transforms or doubles down and explodes. Jaws is the perfect example. Brody is afraid of water. A shark shows up in the coastal town he's responsible for protecting. The entire plot is engineered to force him to confront the one thing he cannot face. Will pointed out that the whole plot of Jaws is structured around Brody's flaw. It begins with the shark arriving, the midpoint is when Brody finally gets the courage to go into the water, and the very final scene isn't the shark blowing up—it's Brody swimming back through the water. Even a film that's ninety-eight percent action is, at its core, structured around a character with a character flaw. This is the standard I aspire to in my own work, even in my action-heavy thrillers. The external plot should be a mirror of the internal struggle. When those two are aligned, the story becomes irresistible. Will also made an important point about series fiction, which is where most commercial authors live. I asked him how this works when your character can't be transformed at the end of every book because there has to be a next book. His answer was elegant: you don't cure them. Episodic TV characters like Fleabag or David Brent or Basil Fawlty never truly change—and the fact that they don't change is actually the source of the comedy. But every episode throws a new story event at them that tests and exposes their flaw. You just keep throwing story events at them again and again. That's a soap opera, a sitcom, and a book series. As I wrote in How to Write a Novel, character flaws are aspects of personality that affect the person so much that facing and overcoming them becomes central to the plot. In Jaws, the protagonist Brody is afraid of the water, but he has to overcome that flaw to destroy the killer shark and save the town. But remember, your characters should feel like real people, so never define them purely by their flaws. The character addicted to painkillers might also be a brilliant and successful female lawyer who gets up at four in the morning to work out at the gym, likes eighties music, and volunteers at the local dog shelter at weekends. Character wounds are different from flaws. They're formed from life experience and are part of your character's backstory—traumatic events that happened before the events of your novel but shape the character's reactions in the present. In my ARKANE thrillers, Morgan Sierra's husband Elian died in her arms during a military operation. This happened before the series begins, but her memories of it recur when she faces a firefight, and she struggles to find happiness again for fear of losing someone she loves once more. And then there's the perennial advice: show, don't tell. Most writers have heard this so many times that it's easy to nod and then promptly write scenes that tell rather than show. Basically, you need to reveal your character through action and dialogue, rather than explanation. In my thriller Day of the Vikings, Morgan Sierra fights a Neo-Viking in the halls of the British Museum and brings him down with Krav Maga. That fight scene isn't just about showing action. It opens up questions about her backstory, demonstrates character, and moves the plot forward. Telling would be something like: “Morgan was an expert in Krav Maga.” Showing is the reader discovering it through the scene itself. Actionable step: Look at the main plot events of your novel. For each major turning point, ask: does this scene specifically test my protagonist's flaw? If not, can you redesign the scene so that it does? The tighter the connection between character and plot, the more powerful the story. 14. The ‘Maestra' Approach: Write Out of Order If you're a discovery writer like me, you may feel like the deep character work I've been describing sounds more suited to plotters. But Barbara Nickless gave me a beautiful metaphor on episode 732 that reframes it entirely. Barbara described her evolving writing process as being like a maestra standing in front of an orchestra. Sometimes you bring in the horns—a certain theme—and sometimes you bring in the strings—a certain character—and sometimes you turn to the soloist. It's a more organic and jumping-around process than linear writing, and Barbara said she's only recently given herself permission to work this way. When I told her that I use Scrivener to write in scenes out of order and then drag and drop them into a structure later, she was genuinely intrigued. And this is how I've always worked. I'll see the story in my mind like a movie trailer—flashes of the big emotional scenes, the pivotal confrontations, the moments of revelation—and I write those first. I don't know how they hang together until quite late in the process. Then I'll move scenes around, print the whole thing out, and figure out the connective tissue. The point is that discovery writers can absolutely build deep characters. Sometimes writing the big emotional scenes first is how you discover who the character is before you fill in the rest. You don't need a twenty-page character worksheet or a 200-page outline like Jeffery Deaver. You need to be willing to follow the character into the unknown and trust that the structure will emerge. As Barbara said, she writes to know what she's thinking. That's the discovery writer's credo. And I would add: I write to know who my characters are. Actionable step: If you're stuck on your current chapter, skip it. Write the scene that's burning in your imagination, even if it's from the middle or the end. That scene might be the key to unlocking who your character really is. 15. Use Research to Help with Empathy Research shouldn't just be about factual accuracy—it's a tool for finding the sensory details that create empathy. Barbara Nickless described research as almost an excuse to explore things that fascinate her, and I feel exactly the same way. I would go so far as to say that writing is an excuse for me to explore the things that interest me. Barbara and I both travel for our stories. For her Dr. Evan Wilding books, she did deep research into Old English literature and the Viking Age. For my thriller End of Days, I transcribed hours of video from Appalachian snake-handling churches on YouTube to understand the worldview of the worshippers, because my antagonist was brought up in that tradition. I couldn't just make that up. I had to hear their language, feel their conviction, understand why they would hold venomous serpents as an act of faith. Barbara also mentioned getting to Israel and the West Bank for research, and I've been to both places too. Finding that one specific sensory detail—the smell of a particular location, the specific way an expert handles a tool, the sound of a particular kind of music—makes the character's life feel lived-in. It's the difference between a character who is described as living in a place and a character who inhabits it. As I wrote in How to Write a Novel, don't write what you know. Write what you want to learn about. I love research. It's part of why I'm an author in the first place. I take any excuse to dive into a world different from my own. Research using books, films, podcasts, and travel, and focus particularly on sources produced by people from the worldview you want to understand. Actionable step: For your next piece of character research, go beyond reading. Watch a documentary, visit a location, talk to someone who lives the experience. Find one sensory detail—a smell, a sound, a texture—that you couldn't have invented. That detail will make your character feel real. Bonus: Measure Your Life by What You Create In an age of AI and a tsunami of content, your ultimate brand protection is the quality of your human creation. Barbara Nickless said that the act of producing itself is a balm to the soul, and I believe that with every fibre of my being. Don't be afraid to take that step back, like I did with my deadlifting. Take the time to master these deeper craft skills. It might feel like you're slowing down or going backwards by not chasing the latest marketing trend, but it's the only way to step forward into a sustainable, high-quality career. Your characters are your signature. No AI can replicate the specificity of your lived experience, the emotional truth of your displaced trauma, or the sensory details you've gathered from a life of curiosity and travel. Those are yours. Pour them into your characters, and they will resonate for years to come. Actionable Takeaway: Identify the Dramatic Question for your current protagonist. Can you state it in a single sentence with the kind of specificity Will Storr described? Is it as clear as “Are you ordinary or extraordinary?” or “Are you the only adult in the room?” If you can't answer it with that kind of precision, your character might still be a sketch. Give them a diagonal toast moment today. Find the one hyper-specific detail that proves they are not an imitation of life. And then ask yourself: does your plot test your character's flaw in every major scene? If you can align those two things—a precisely defined character and a plot that exists to test them—you will have a story that readers cannot put down. References and Deep Dives The episodes I've referenced today are all available with full transcripts at TheCreativePenn.com: Episode 732 — Facing Fears, and Writing Unique Characters with Barbara Nickless Episode 673 — Writing Choctaw Characters and Diversity in Fiction with Sarah Elisabeth Sawyer Episode 624 — Writing Characters with Matt Bird Episode 550 — The Heroine's Journey with Gail Carriger Episode 490 — How Character Flaws Shape Story with Will Storr Books mentioned: The Secrets of Character: Writing a Hero Anyone Will Love by Matt Bird The Science of Storytelling by Will Storr The Heroine's Journey by Gail Carriger How to Write a Novel: From Idea to Book by Joanna Penn You can find all my books for authors at CreativePennBooks.com and my fiction and memoir at JFPennBooks.com Happy writing! How was this episode created? This episode was initiated created by NotebookLM based on YouTube videos of the episodes linked above from YouTube/TheCreativePenn, plus my text chapters on character from How to Write a Novel. NotebookLM created a blog post from the material and then I expanded it and fact checked it with Claude.ai 4.6 Opus, and then I used my voice clone at ElevenLabs to narrate it. The post Writing Characters: 15 Actionable Tips For Writing Deep Character first appeared on The Creative Penn.

When life is leaving you with so many questions, especially when you are dealing with an epilepsy diagnosis, sometimes it is good to hear some answers from someone with experience. Good thing we have our in-house expert, Greg Grunberg, to answer the call! Welcome to the final chapter of our two-part series in which Greg answers the top 20 questions that have come from the epilepsy community. While he says he might not have all the answers, he speaks from his heart after nearly 30 years of being a caregiver to his son with epilepsy, and he is here to assure you that it is going to be okay. We don't know what version of okay that might look like, but it certainly be okay. It is not wrong to ask questions, or be frustrated, or have the feeling that you want to give up. The best thing to do when that happens is to... you guessed it... talk about it! In this part 2, Greg takes on questions about making jokes about epilepsy, what to do about treatment not working, SUDEP, protecting a child with epilepsy vs letting them make mistakes or risk danger, and so much more. This is real stuff, these are real feelings, and Greg has the real answers.  We would love to hear your perspective. If you have ideas, or agreements, even disagreements with Greg, let us know! Comment, share, and let's keep the conversation going. The first step is ALWAYS to talk about it! Talk About It with Greg Grunberg is excited to be sponsored by Neurelis and by Jazz Pharmaceuticals.

According to Matt Preston, he only has 14 more summers. And he’s determined to make the most of them.

„Ich sehe Eltern, deren Kind an SUDEP gestorben ist, und sie fragen mich: ‚Warum hat mein Arzt mir das nicht erzählt?‘“ Über den Sudden Unexpected Death in Epilepsy müssen Eltern informiert sein, findet Prof. Dr. Angela Kaindl. Sie ist Direktorin der Klinik für Pädiatrie mit Schwerpunkt Neurologie an der Charité und leitet das SPZ mit dem Deutschen Epilepsiezentrum für Kinder und Jugendliche an der Charité sowie die Forschungsgruppe für Epilepsie und Hirnentwicklungsstörungen. Ihre Stimme hat Nachdruck, wenn es um die Risiken geht, denn keine Epilepsie ist „benigne“. Zu einer guten Basisdiagnostik und korrekten Klassifikation gehört auch die Genetik. Die Präzisionstherapie ist äußerst zukunftsträchtig. Epilepsie-Therapie hat heute fünf Säulen. Medikation ist die eine, Hirnstimulation und Immunmodulation zwei weitere. Doch auch ketogene Ernährung ist ein ernstzunehmender Baustein. Keineswegs „Letzte-Wiese-Medizin“ ist die Epilepsiechirurgie. Mit ihr lassen sich nicht-kurative Verbesserungen erreichen, und manchmal besteht die Chance auf Heilung. **Muster anfordern:** Eine Musteranforderung des genannten Produktes ist für Ärzte jeweils in einem Zeitraum von 8 Wochen ab dem ersten Erscheinungstag der Podcastfolge möglich: https://www.infectopharm.de/ma/sanacutan/ Weitere Informationen zu SanaCutan Basiscreme Packungsbeilage SanaCutan Basiscreme Fachinformation SanaCutan Basiscreme Pflichttext SanaCutan Basiscreme **Link zum Transkript:** https://www.infectopharm.de/consilium/podcast/podcast-paediatrie/ **Kontakte:** Feedback zum Podcast? podcast@infectopharm.com Homepage zum Podcast: www.infectopharm.de/consilium/podcast/ Für Fachkreise: www.wissenwirkt.com und App „Wissen wirkt.“ für Android und iOS Homepage InfectoPharm: www.infectopharm.de **Disclaimer:** Der _consilium_ – Pädiatrie-Podcast dient der neutralen medizinischen Information und Fortbildung für Ärzte. Für die Inhalte sind der Moderator und die Gäste verantwortlich, sie unterliegen dem wissenschaftlichen Wandel des Faches. Änderungen sind vorbehalten. **Impressum:** _consilium_ ist eine Marke von InfectoPharm Arzneimittel und Consilium GmbH Von-Humboldt-Str. 1 64646 Heppenheim Tel.: 06252 957000 Fax: 06252 958844 E-Mail: kontakt@infectopharm.com Geschäftsführer: Philipp Zöller (Vors.), Michael Gilster, Dr. Markus Rudolph, Dr. Aldo Ammendola Registergericht: Darmstadt – HRB 24623 USt.-IdNr.: DE 172949642 Verantwortlich für den Inhalt: Dr. Markus Rudolph

Welcome to the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. In this episode, "Building Safer, Smarter, and More Personalized Epilepsy Care," Orrin Devinsky, MD, discusses major areas of progress and ongoing challenges in epilepsy care. Devinsky, a professor in the departments of neurology, neurosurgery, and psychiatry at NYU Grossman School of Medicine, reflects on how the treatment landscape has evolved in recent years, including advances in medication, awareness of SUDEP, and patient counseling. Devinsky also weighs in on the current treatment hierarchy for antiepileptic drugs and whether first-line therapeutic strategies should change. Additional discussion touches on the state of gene therapy development, the need for greater research in disease prevention, the implications of GLP/GIP agents in neurological care, and how neurodevelopmental management is advancing for pediatric patients with epilepsy. Looking for more Epilepsy discussion? Check out the NeurologyLive® Epilepsy clinical focus page. Episode Breakdown: 0:55 – How epilepsy care has evolved and where progress has been made 5:30 – Whether first-line therapy choices for epilepsy should be re-evaluated 8:35 – Why gene therapy progress has been slower than expected in epilepsy 12:05 – Neurology News Minute 14:10 – What areas of epilepsy research deserve greater attention and funding 17:10 – How GLP/GIP agents could intersect with neurological and epilepsy care 20:00 – How clinicians can better address neurodevelopmental challenges in patients with epilepsy The stories featured in this week's Neurology News Minute, which will give you quick updates on the following developments in neurology, are further detailed here: Neflamapimod Advances to Phase 3 Trial in Dementia With Lewy Bodies After Positive RewinD-LB Results FDA Delays Review Deadline for Hunter Syndrome Agent Tividenofusp Alfa FDA Clears Roche's Elecsys pTau181 Test for Ruling Out Alzheimer-Related related Amyloid Pathology Thanks for listening to the NeurologyLive® Mind Moments® podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com.

In honor of SUDEP Action Day on Wednesday, October 15th, we speak with Maria Teresa Ioannou of the Joanna Sophia Foundation who tragically lost her nine-year-old daughter Joanna Sophia to SUDEP in 2018.

In this second episode with Dr Phillip Pearl, we explore the human side of rare epilepsies: what drives him as a paediatric neurologist, how advocacy transforms progress, and why research in ultra-rare conditions can change the lives of people with common disorders. We also tackle difficult but vital topics - SUDEP, depression, and suicide in epilepsy - and end on a hopeful note with music and the brain!  

In this Healthed lecture, Professor Terence O'Brien explains what SUDEP is and whether epilepsy-related premature death can be prevented. In addition, he will discuss the risk factors for SUDEP, the potential role for anti-epileptic adjunctive medication and surgery in preventing SUDEP and what information patients with epilepsy and their families need to be aware of about the condition. See omnystudio.com/listener for privacy information.

Friday, August 29th, 2025. Week 35. 5th Annual Gala was a great success! cureSYNGAP1.org/Gala5 Sad to miss it?  Join us in Boston or South Carolina. Deadline for Boston is 9/3 for tickets. Beacon of Hope September 12, 2025 - Boston, MA cureSYNGAP1.org/Beacon25 Scramble for SYNGAP October 4, 2025 - Greer, SC cureSYNGAP1.org/Scramble   SRF is active in Lisbon at #IEC2025 thank you KD, JA, VA!  Hi Dr. Knowles! We are at Booth #17 https://www.linkedin.com/posts/victoria-arteaga-26913433_syngap1-familyjourney-resilience-activity-7366951726001606657-6pcM #Bexicaserin News: New data from the PACIFIC Study, LP352-202, Open Label Extension (OLE) will be presented at the 36th International Epilepsy Congress (IEC) in Lisbon, Portugal (Aug 30 - Sept 3, 2025). The full results of the open label extension (OLE) of the Phase 1b/2a PACIFIC trial investigating bexicaserin for the treatment of patients with Developmental and Epileptic Encephalopathies (DEEs), will be presented for the first time at the International Epilepsy Annual Congress   Bexicaserin, which has been granted Breakthrough Therapy designation by the FDA, demonstrated reductions in countable and total motor seizure frequency in the extension study comparable to reductions seen in the Phase 1b/2a PACIFIC trial, reinforcing durability of response and validating its progression to Phase 3 trials.   Additional data will be presented from the audiogenic seizure model and the GAERS absence epilepsy model, investigating sudden unexpected death in epilepsy (SUDEP), and seizure reduction respectively.   During the OLE, a median reduction of 59.3% in countable motor seizure frequency was observed, with 55% of participants experiencing reductions of ≥50% compared to the baseline before the PACIFIC trial.   This trial, EMERALD and other studies all at https://curesyngap1.org/resources/studies/   See and comment on Vicky's recent post on her 7 year SYNGAP1-iversary: https://www.linkedin.com/posts/victoria-arteaga-26913433_syngap1-familyjourney-resilience-activity-7366951726001606657-6pcM    Join Citizen Health, we are at 275!  We should double that. https://www.citizen.health/partners/srf   DSCIII Renewed to include SYNGAP1 alongside TSC, SHANK3 (aka PMD) and PTEN.     CFC Starts on 9/1 https://curesyngap1.org/events/fundraisers/combined-federal-campaign-2025/  

Every day, roughly 10 people in the U.S. die from SUDEP (Sudden Unexpected Death in Epilepsy), most found face down in bed. Soterya is changing that with an ML-powered bed that detects sleep position and can gently reposition a person without waking them.I spoke with Norman Wen about how ML, robotics, and thoughtful design are merging to improve sleep health, and potentially save lives. Norman is the CEO of Soterya, a company building what you might call a smart bed. Their bed, Korus, is built around a basic but life-saving idea: don't let people sleep face down. That insight led to a system that can detect and reposition sleepers safely without relying on intrusive cameras and without waking them.Embedded pressure sensors provide a real-time pressure map, which feeds into a machine learning algorithm trained to recognize body positions. While image-based AI has the benefit of massive open datasets, Norman's team is tackling the harder path: building their own data internally to preserve privacy and stay within the mattress itself.Not subscribed? Let's fix that. No spam, just good content wherever I find it.The actuation system comprises equally clever engineering. Pneumatic cells, each one both a sensor and a mover, create a modular surface that adjusts to the sleeper's position. The system is being designed to reposition users without waking them, which means it needs to recognize both position AND sleep state. And all of this runs on the device, not the cloud, for reliability in critical situations like seizure prevention. Beyond SUDEP, Norman sees a much broader opportunity: addressing sleep apnea, gastric reflux, chronic back pain, and even maternal health in pregnancy. Sleep position can affect all of these, and for people who are bedridden or aging with multiple conditions, this kind of intervention could be significant.Right now, Soterya is pursuing a go-to-market path that starts with health-conscious consumers and moves toward regulated medical devices. That approach gives them room to develop, collect data, and refine the product while still making a difference. For people who can't fall asleep wearing a device, a bed that just does the work passively may be a better answer.At a time when we are becoming more aware of the importance of good sleep, this is one path to improvement that ultimately may have a huge impact.Your deepest insights are your best branding. I'd love to help you share them. Chat with me about custom content for your life science brand. Or visit my website. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit cclifescience.substack.com

Welcome to the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. In this episode, "Sleep and Seizures: Emerging Insights From AAN 2025," Nancy Foldvary-Schaefer, DO, director of the Sleep Disorders Center at Cleveland Clinic, reflected on key sleep-related topics presented at this year's AAN Annual Meeting. She highlighted the growing clinical interest in underrecognized conditions like idiopathic hypersomnia and narcolepsy, stressing the need for better awareness and earlier diagnosis. Foldvary-Schaefer also detailed the development of the Sleep by Cleveland Clinic mobile app, designed to improve screening for common sleep disorders with validated tools and real-time resources. Additionally, she discussed new findings on the prevalence of obstructive sleep apnea in adults with epilepsy, pointing to the importance of routine sleep screening in this population, regardless of seizure severity. Finally, she shared exploratory data on SSRI use and peri-ictal respiratory patterns in epilepsy, offering new perspectives on potential protective mechanisms tied to SUDEP risk. Looking for more neuromuscular discussion? Check out the NeurologyLive® Sleep disorders clinical focus page. Episode Breakdown: 1:00 – Key sleep topics discussed at AAN 2025 and the growing interest in hypersomnia 5:45 – Development and purpose of the SLEEP mobile app by Cleveland Clinic 10:35 – Findings on obstructive sleep apnea prevalence in adults with epilepsy 15:05 – Neurology News Minute 17:10 – The need for sleep disorder screening in epilepsy clinical trials 19:45 – Exploratory findings on SSRI use and respiratory patterns in patients with epilepsy The stories featured in this week's Neurology News Minute, which will give you quick updates on the following developments in neurology, are further detailed here: FDA Approves Pre-Filled Syringe Administration for FcRn Modulator Efgartigimod FDA Approves CT-132 as First Digital Therapeutic for Preventive Treatment of Episodic Migraine FDA Expands Diazepam Nasal Spray Indication to Treat Ages 2 to 5 Thanks for listening to the NeurologyLive® Mind Moments® podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com.

Torie chats with neurologist Sanja Gluscevic about SUDEP (Sudden Unexpected Death in Epilepsy) - a critical, often avoided topic! Sanja provides statistics and how to minimise risk factors. Sanja emphasises the need for effective communication between clinician and patient and/or caregiver, plus highlights holistic approaches to minimising SUDEP risk, including managing mood and sleep, and the importance of adherence to medication! ------------------------------------------

Despite advances in epilepsy management, disparities and lack of inclusion of many people with epilepsy are associated with increased morbidity and mortality. Improving awareness and promoting diversity in research participation can advance treatment for underserved populations and improve trust. In this episode, Teshamae Monteith, MD, PhD, FAAN speaks Dave F. Clarke, MBBS, FAES, author of the article “Diversity and Underserved Patient Populations in Epilepsy,” in the Continuum® February 2025 Epilepsy issue. Dr. Monteith is a Continuum® Audio interviewer and an associate editor of Continuum® Audio and an associate professor of clinical neurology at the University of Miami Miller School of Medicine in Miami, Florida. Dr. Clarke is the Kozmetsky Family Foundation Endowed Chair of Pediatric Epilepsy and Chief or Comprehensive Pediatric Epilepsy Center, Dell Medical School at the University of Texas at Austin in Austin, Texas. Additional Resources Read the article: Diversity and Underserved Patient Populations in Epilepsy Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @HeadacheMD Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum Journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME. Dr Monteith: This is Dr Teshamae Monteith. Today I'm interviewing Dr Dave Clarke about his article on diversity and underserved patient populations in epilepsy, which appears in the February 2025 Continuum issue on epilepsy. So why don't you introduce yourself to our audience? Dr Clarke: Sure. My name is Dr Dave Clarke, as alluded to. I'm presently at the University of Texas in Austin, originating from much farther south. I'm from Antigua, but have been here for quite a while working within the field in epilepsy surgery, but more and more getting involved in outreach, access to care, and equity of healthcare in epilepsy. Dr Monteith: And how did you get involved in this kind of work? Dr Clarke: That's an amazing question. You know, I did it in a bit of a inside out fashion. I initially started working in the field and trying to get access to persons in the Caribbean that didn't have any neurological care or investigative studies, but very quickly realized that persons around the corner here in Texas and wherever I've worked have had the exact same problems, getting access via fiscal or otherwise epilepsy care, or geographically getting access, with so few having neurologists close at hand. Therefore, I started working both on a regional, national, and it transcended to a global scale. Dr Monteith: Wow, so you're just everywhere. Dr Clarke: Well, building bridges. I've found building bridges and helping with knowledge and garnering knowledge, you can expand your reach without actually moving, which is quite helpful. Dr Monteith: Yeah. So why don't you tell us why you think this work is so important in issues of diversity, underserved populations, and of course, access to epilepsy care? Dr Clarke: Sure, not a problem. And I think every vested person in this can give you a different spiel as to why they think it's important. So, I'll add in a few facts pertaining to access, but also tell you about why I think personally that it's not only important, but it will improve care for all and improve what you believe you could do for a patient. Because the sad thing is to have a good outcome in the United States presently, we have over three hundred epilepsy centers, but they have about eight or nine states that don't have any epilepsy centers at all. And even within states themselves, people have to travel up to eight hours, i.e., in Texas, to get adequate epilepsy care. So that's one layer. Even if you have a epilepsy center around the corner, independent of just long wait times, if you have a particular race or ethnicity, we've found out that wait may be even longer or you may be referred to a general practitioner moreso than being referred to an epilepsy center. Then you add in layers of insurance or lack thereof, which is a big concern regardless of who you are; poverty, which is a big concern; and the layers just keep adding more. Culture, etcetera, etcetera. If you could just break down some of those barriers, it has been shown quite a few years ago that once you get to an epilepsy center, you can negate some of those factors. You can actually reduce time to access and you can improve care. So, that's why I'm so passionate about this, because something could potentially be done about it. Dr Monteith: That's cool. So, it sounds like you have some strategies, some strategies for us. Dr Clarke: Indeed. And you know, this is a growth and this is a learning curve for me and will be for others. But I think on a very local, one-to-one scale, the initial strategy I would suggest is you have to be a good listener. Because we don't know how, when, where or why people are coming to us for their concerns. And in order to judge someone, if they may not have had a follow-up visit or they may not have gotten to us after five medications, the onus may not have been on that person. In other words, as we learned when we were in medical school, history is extremely important, but social history, cultural history, that's also just as important when we're trying to create bridges. The second major thing that we have to learn is we can't do this alone. So, without others collaborating with us outside of even our fields, the social worker who will engage, the community worker who will discuss the translator for language; unless you treat those persons with respect and engage with those persons to help you to mitigate problems, you'll not get very far. And then we'll talk about more, but the last thing I'll say now is they have so many organizations out there, the Institute of Medicine or the International League Against Epilepsy or members of the American Epilepsy Society, that have ways, ideas, papers, and articles that can help guide you as to how better mitigate many of these problems. Dr Monteith: Great. So, you already mentioned a lot of things. What are some things that you feel absolutely the reader should take away in reading your article? You mentioned already listening skills, the importance of interdisciplinary work, including social work, and that there are strategies that we can use to help reduce some of this access issues. But give me some of the essential points and then we'll dive in. Dr Clarke: OK. I think first and foremost we have to lay the foundation in my mind and realize what exactly is happening. If you are Native American, of African descent, Hispanic, Latinx, geographically not in a region where care can be delivered, choosing one time to epilepsy surgery may be delayed twice, three, four times that of someone of white descent. If you are within certain regions in the US where they may have eight, nine, ten, fourteen epilepsy centers, you may get to that center within two to three years. But if you're in an area where they have no centers at all, or you live in the Dakotas, it may be very difficult to get to an individual that could provide that care for you. That's very, very basic. But a few things have happened a few years ago and even more recently that can help. COVID created this groundswell of ambulatory engagement and ambulatory care. I think that can help to mitigate time to get into that person and improving access. In saying that, there are many obstacles to that, but that's what we have to work towards: that virtual engagement and virtual care. That would suggest in some instances to some persons that it will take away the one-to-one care that you may get with persons coming to you. But I guarantee that you will not lose patients because of this, because there's too big a vacuum. Only 22% of persons that should actually get to epilepsy centers actually get to epilepsy centers. So, I think we can start with that foundation, and you can go to the article and learn a lot more about what the problems are. Because if you don't know what the problems are, you can't come up with solutions. Dr Monteith: Just give us a few of the most persistent inequities and epilepsy care? Dr Clarke: Time to seeing a patient, very persistent. And that's both a disparity, a deficiency, and an inequity. And if you allow me, I'll just explain the slight but subtle difference. So, we know that time to surgery in epilepsy in persons that need epilepsy surgery can be as long as seventeen years. That's for everyone, so that's a deficiency in care. I just mentioned that some sociodemographic populations may not get the same care as someone else, and that's a disparity between one versus the other. Health equity, whether it be from NIH or any other definition, suggests that you should get equitable care between one person and the other. And that brings in not only medical, medicolegal or potential bias, that we may have one person versus the other. So, there's a breakdown as to those different layers that may occur. And in that I'm telling you what some of the potential differences are. Dr Monteith: And so, you mentioned, it comes up, race and ethnicity being a major issue as well as some of the geographic factors. How does that impact diagnosis and really trying to care for our patients? Dr Clarke: So again, I'm going to this article or going to, even. prior articles. It has been shown by many, and most recently in New Jersey, that if you're black, Hispanic, Latin- Latinx, it takes you greater than two times the time to surgery. Reduced time to surgery significantly increases morbidity. It potentially increases mortality, as has been shown by a colleague of mine presently in Calgary. And independent of that, we don't look at the other things, the other socially related things. Driving, inability to work, inability to be adequately educated, the stigma related to that in various cultures, various countries. So, that deficit not only increased the probability of having seizures, but we have to look at the umbrella as to what it does. It significantly impacts quality of life of that individual and, actually, the individuals around them. Dr Monteith: So, what are some of these drivers, and how can we address them, or at least identify them, in our clinic? Dr Clarke: That's a question that's rather difficult to answer. And not because there aren't ideas about it, but there's actually mitigating those ideas or changing those ideas we're just presently trying to do. Although outlines have been given. So, in about 2013, the federal government suggested outlines to improve access and to reduce these inequities. And I'll just give you a few of them. One of those suggestions was related to language and having more improved and readily available translators. Something simple, and that could actually foster discussions and time to better management. Another suggestion was try to train more persons from underserved populations, persons of color. Reason being, it has been shown in the social sciences and it is known in the medical sciences that, if you speak to a person of similar culture, you tend to have a better rapport, you tend to be more compliant, and that track would move forward, and it reduces bias. Now we don't have that presently, and I'm not sure if we'll have that in the near future, although we're trying. So then, within your centers, if you have trainings on cultural sensitivity, or if you have engagements and lectures about how you can engage persons from different populations, those are just some very simple pearls that can improve care. This has been updated several times with the then-Institute of Medicine in 2012, 2013, they came out with, in my mind, a pretty amazing article---but I'm very biased---in which they outline a number of strategic initiatives that could be taken to improve research, improve clinical care, improve health equity through health services research, to move the field forward, and to improve overall care. They updated this in 2020, and it's a part of the 2030 federal initiative not only for epilepsy, but to improve overarching care. All of this is written in bits and pieces and referenced in the article. To add icing on top, the World Health Organization, through advocacy of neurological groups as well as the International League Against Epilepsy and the AES, came out with the Intersectoral Action Plan on Epilepsy and Other Neurological Diseases, which advocates for parallel improvement in overall global care. And the United States have signed on to it, and that have lit a fire to our member organizations like the American Epilepsy Society, American Academy of Neurology, and others, trying to create initiatives to address this here. I started off by saying this was difficult because, you know, we have debated epilepsy care through 1909 when the International League against Epilepsy was founded, and we have continually come up with ways to try and advance care. But this have been the most difficult and critical because there's social dynamics and social history and societal concerns that have negated us moving forward in this direction. But fortunately, I think we're moving in that direction presently. That's my hope. And the main thing we have to do is try to sustain that. Dr Monteith: So, you talked about the importance of these global initiatives, which is huge, and other sectors outside of neurology. Like for example, technology, you spoke about telemedicine. I think you were referring to telemedicine with COVID. What other technologies that are more specific to the field of epilepsy, some of these monitorings that maybe can be done? Dr Clarke: I was just going to just going to jump on that. Thank you so much for asking. Dr Monteith: I have no disclosures in this field. I think it's important and exciting to think how can we increase access and even access to monitoring some of these technologies. That might be expensive, which is another issue, but…. Dr Clarke: So, the main things in epilepsy diagnosis and management: you want to hear from the patient history, you want to see what the seizures look like, and then you want to find ways in which to monitor those seizures. Hearing from the patient, they have these questionnaires that have been out there, and this is local, regional, global, many of them standardized in English and Spanish. Our colleagues in Boston actually created quite a neat one in English and Spanish that some people are using. Ecuador has one. We have created someone- something analogous. And those questionnaires can be sent out virtually and you can retrieve them. But sometimes seeing is believing. So, video uploads of seizures, especially the cell phone, I think has been management-changing for the field of epilepsy. The thing you have to do however, is do that in a HIPAA-compliant way. And several studies are ongoing. In my mind, one of the better studies here was done on the East Coast, but another similar study, to be unnamed, but again, written out in the articles. When you go into these apps, you can actually type in a history and upload a video, but the feed is not only going to you, it may be going to the primary care physician. So, it not only helps in one way in you educating the patient, but you educate that primary care physician and they become extenders and providers. I must add here my colleagues, because we can't do without them. Arguably in some instances, some of the most important persons to refer patients, that's the APPs, the PAs and the nurse practitioners out there, that help to refer patients and share patients with us. So, that's the video uploads they're seeing. But then the other really cool part that we're doing now is the ambulatory world of EEGs. Ceribell, Zeto, to name of few, in which you could potentially put the EEG leads on persons with or without the EEG technologist wirelessly and utilize the clouds to review the EEGs. It's not perfect just yet, but that person that has to travel eight hours away from me, if I could do that and negate that travel when they don't have money to pay for travel or they have some potential legal issues or insurance-related issues and I could read the EEG, discuss with them via telemedicine their care, it actually improves access significantly. I'm going to throw in one small twist that, again, it's not perfect. We're now trying to monitor via autonomic features, heart rate movement and others, for seizures and alert family members, parents, because although about 100,000 people may be affected with epilepsy, we're talking about 500,000 people who are also affected that are caregivers, affiliates, husbands, wives, etcetera. Just picture it: you have a child, let's say three, four years old and every time they have a seizure- or not every time, but 80% of times when they have a seizure, it alerts you via your watch or it alerts you in your room. It actually gives that child a sense of a bit more freedom. It empowers you to do something about it because you can understand here. It potentially negates significant morbidity. I won't stretch it to say SUDEP, but hopefully the time will come when actually it can prevent not only morbidity, but may prevent death. And I think that's the direction we are going in, to use technology to our benefit, but in a HIPAA-compliant way and in a judicious way in order to make sure that we not only don't overtreat, but at the end of the day, we have the patient as number one, meaning everything is vested towards that patient and do no harm. Dr Monteith: Great. One thing you had mentioned earlier was that there are even some simple approaches, efficiency approaches that we can use to try and optimize care for all in our clinics. Give me what I need to know, or do. Give me what I need to do. Dr Clarke: Yeah, I'll get personal as to what we're trying to do here, if you don't mind. The initial thing we did, we actually audited care and time to care delivery. And then we tried to figure out what we could do to improve that access and time to care, triaging, etcetera. A very, very simple thing that can be done, but you have to look at costs, is to have somebody that actually coordinates getting persons in and out of your center. If you are a neurologist that works in private practice, that could potentially be a nurse being associated directly one-and-one with one of the major centers, a third- or fourth-level center. That coordination is key. Educate your nurses about epilepsy care and what the urgent situations are because it will take away a lot of your headache and your midnight calls because they'll be able to know what to do during the day. Video uploads, as I suggested, regardless of the EMR that you have, figure out a way that a family could potentially send a video to you, because that has significantly helped in reducing investigative studies. Triaging appropriately for us to know what patients we can and cannot see. Extenders has helped me significantly, and that's where I'll end. So, as stated, they had many neurologists and epileptologists, and utilizing appropriately trained nurse practitioners or residents, engaging with them equally, and/or social workers and coordinators, are very helpful. So hopefully that's just some low-hanging fruit that can be done to improve that care. Dr Monteith: So why don't you give us some of your major takeaways to how we can improve epilepsy care for all people? Dr Clarke: I've alluded to some already, but I like counts of threes and fives. So, I think one major thing, which in my mind is a major takeaway, is cultural sensitivity. I don't think that can go too far in improving care of persons with epilepsy. The second thing is, if you see a patient that have tried to adequately use medications and they're still having seizures, please triage them. Please send them to a third- or fourth-level epilepsy center and demand that that third- or fourth-level epilepsy center communicate with you, because that patient will eventually come back and see you. The third thing---I said three---: listen to your patients. Because those patients will actually help and tell you what is needed. And I'm not only talking about listening to them medication-wise. I know we have time constraints, but if you can somehow address some of those social needs of the patients, that will also not only improve care, but negate the multiple calls that you may get from a patient. Dr Monteith: You mentioned a lot already. This is really wonderful. But what I really want to know is what you're most hopeful about. Dr Clarke: I have grandiose hopes, I'll tell you. I'll tell you that from the beginning. My hope is when we look at this in ten years and studies are done to look at equitable care, at least when it comes to race, ethnicity, insurance, we'll be able to minimize, if not end, inequitable care. Very similar to the intersectoral action plan in epilepsy by 2030. I'll tell you something that suggests, and I think it's global and definitely regional, the plan suggests that 90% of persons with epilepsy should know about their epilepsy, 80% of persons with epilepsy should be able to receive appropriate care, and 70% of persons with epilepsy should have adequately controlled epilepsy. 90, 80, 70. If we can get close to that, that would be a significant achievement in my mind. So, when I'm chilling out in my home country on a fishing boat, reading EEGs in ten years, if I can read that, that would have been an achievement that not necessarily I would have achieved, but at least hopefully I would have played a very small part in helping to achieve. That's what I think. Dr Monteith: Awesome. Dr Clarke: I appreciate you asking me that, because I've never said it like that before. In my own mind, it actually helped with clarity. Dr Monteith: I ask great questions. Dr Clarke: There you go. Dr Monteith: Thank you so much. I really- I really appreciate your passion for this area. And the work that you do it's really important, as you mentioned, on a regional, national, and certainly on a global level, important to our patients and even some very simple concepts that we may not always think about on a day-to-day basis. Dr Clarke: Oh, I appreciate it. And you know, I'm always open to ideas. So, if others, including listeners, have ideas, please don't hesitate in reaching out. Dr Monteith: I'm sure you're going to get some messages now. Dr Clarke: Awesome. Thank you so much. Dr Monteith: Thank you. I've been interviewing Dr Dave Clarke about his article on diversity and underserved patient populations in epilepsy, which appears in the most recent issue of Continuum on epilepsy. Be sure to check out Continuum Audio episodes from this and other issues. And thank you to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

Many patients with epilepsy are unable to acheive optimal seizure control with medical therapy. Palliative surgical procedures, neurostimulation devices, and other nonpharmalogical treatments can lead to a meaningful reduction in seizures and improved outcomes. In this episode, Teshamae Monteith, MD FAAN, speaks with Daniel Friedman, MD, MSc, author of the article “Surgical Treatments, Devices, and Nonmedical Management of Epilepsy,” in the Continuum® February 2025 Epilepsy issue. Dr. Montieth is a Continuum® Audio interviewer and an associate editor of Continuum® Audio and an associate professor of clinical neurology at the University of Miami Miller School of Medicine in Miami, Florida. Dr. Friedman is a professor (clinical) of neurology at NYU Grossman School of Medicine and Director of NYU Langone Comprehensive Epilepsy Center at NYU Langone Health in New York, New York. Additional Resources Read the article: Surgical Treatments, Devices, and Nonmedical Management of Epilepsy Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @headacheMD Guest: @dfriedman36  Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum Journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME. Dr Monteith: This is Dr Teshamae Monteith. Today, I'm interviewing Dr Daniel Friedman about his article on surgical treatments, devices, tools, and non-medication management of epilepsy, which appears in the February 2025 Continuum issue on epilepsy. Welcome to the podcast. How are you? Dr Friedman: I'm well, how are you? Dr Monteith: Thank you for your article. Dr Friedman: Thank you for the opportunity to talk today. Dr Monteith: Why don't you introduce yourself? Dr Friedman: So yeah, so I'm Dan Friedman. I am a professor of neurology here at NYU Grossman School of Medicine and I am the director of the NYU Comprehensive Epilepsy Center. I'm primarily an adult neurologist and I treat teens and adults with hard- difficult-to-treat epilepsy, including surgical treatments for epilepsy. Dr Monteith: And I know you see a lot of patients because I did my residency there. And so, when you graduate, you get a lot of it, like I think many, many residents. What inspired you to choose epilepsy as a profession? Dr Friedman: I came to neurology through my interest in neuroscience. I was a neuroscience undergraduate. I was very interested in the brain and brain function. Particularly, I was interested in how neurons communicate and organize to entrain and rhythms and that encode information. And through that interest and through my experiences in the laboratory, I actually became interested in how they do that in pathological circumstances like seizures. And so, I started reading about epilepsy, and then when I started seeing patients with epilepsy, you know, I decided this is the specialty for me for a lot of reasons. One is it combines inpatient and outpatient care. You get to establish long-term relationships with patients. For many of my patients, I'm probably the doctor that they see most often. You see people across the lifespan. And what I'm going to talk about today is for some people, you actually get to cure their disease, which at the time I was coming into neurology was something pretty rare. Dr Monteith: Yeah, that's great. Why don't you tell us, what were you thinking when you started writing the article? What did you set out to do? Dr Friedman: What I really wanted to do is to educate neurologists out there about the options that they have for their patients with epilepsy, especially those with difficult-to-treat or drug-resistant epilepsy, and give them the tools to communicate those options. Especially for them to understand the rationale, why we choose the interventions that we do as epileptologists, how to appropriately refer patients and have them be partners in that discussion with patients and families. One of the things that we have known for a long time is that the time to referral for things like epilepsy surgery is too long. You know, the average patient with drug resistant epilepsy who undergoes epilepsy surgery waits about twenty years. And for patients who could have curative therapy, you know, become seizure free, that's a lot of life years lost. If we can get patients to that potentially life-altering therapy earlier, that'd be great. Dr Monteith: Yeah, that is really impactful as you think about it. So why don't you tell us what the essential points of your article? Dr Friedman: The central point of my article is really that when patients have drug-resistant epilepsy, which means that our available anti-seizure medicines are not controlling their seizures to the degree that they need, there are other treatment options. Some of those are what we call curative, which means that they could stop their seizures entirely; and some of them are palliative, they could reduce the frequency or severity of seizures and improve quality of life and other outcomes. The other thing that I wanted to highlight was, in addition to these types of therapies, there are other tools we have at our disposal that can improve the quality of life and safety of our patients with epilepsy, including devices for seizure monitoring. Dr Monteith: And how do you define drug-resistant epilepsy? I feel like that could be a moving target. Dr Friedman: The International League Against Epilepsy actually set out to define it about a decade ago, and they defined it as patients who fail at least two appropriately selected anti-seizure medicines due to lack of efficacy. Then they're still having ongoing seizures. What does that mean? So, that means that the medicine that was chosen was appropriate for the type of seizures that they have, whether it's focal or generalized, and that it didn't work because of a lack of efficacy and not because of side effects. And we know from multiple studies that once patients fail two medications, the likelihood that the third, fourth, fifth, etcetera, medicine will control their seizures becomes smaller and smaller. It's not impossible, but the rates fall below five percent. And so we call those patients drug-resistant. Dr Monteith: So, it sounds like despite newer therapies, really things haven't changed in ten years. Dr Friedman: Yeah, unfortunately, at least when the concept was first investigated back in 2000 by Quan and Brody, they found that a third of patients were drug-resistant. When they went back in the mid-2010s to relook at these patients, despite the introduction of many new medications, the rate of patients who were drug-resistant was essentially unchanged. There may be therapies that are emerging or in development that may have better odds, but right now we don't really understand what makes people drug resistant and how we can target that. Dr Monteith: But you do raise a good point that this is about efficacy and not tolerability. And at least for some of the newer medications, they're better tolerated. If you stop the medicine because you had some side effect, that might change how that person has classified better-tolerated treatments. Dr Friedman: It's true. And better-tolerated treatments, you can potentially use higher doses. One of the things that is not in the definition of drug-resistant epilepsy, but as a practicing neurologist, we all know, is that the patients have to take the medicine for it to be effective. And unfortunately, they have to take it every day. And if the medicine makes them feel bad, they may choose not to take it, present to you as drug-resistant, when in reality they may be drug-sensitive if you got them on medicine that doesn't make them feel bad. Dr Monteith: So why don't we talk about patients that are ideal candidates for epilepsy surgery? Dr Friedman: The ideal candidates for epilepsy surgery… and I'll start by talking about curative epilepsy surgery, where the goal of the surgery is to make patients seizure-free. The best candidates are patients who have lesional epilepsy, meaning that there is a visible MRI abnormality like a focal cortical dysplasia, hippocampus sclerosis, cavernoma in a part of the brain that is safe to resect, non-eloquent, and where you can safely perform a wide margin of resection around that lesion. It helps if they have few or no generalized tonic-clonic seizures and a shorter duration of epilepsy. So the ideal patient, the patient that if they came to my office, I would say you should get surgery right now, are patients with non-dominant temporal lobe epilepsy of a few years' duration. So as soon as they've shown that they're not responding to two medicines, those are the ideal patients to say, you would have the most benefit and the least risk from epilepsy surgery. We know from studies that patients with temporal lobe epilepsy do a little better with surgery. We know patients who have a visible lesion on MRI do better with epilepsy surgery. We know that patients who have infrequent secondarily generalized seizures do better. But all patients with drug-resistant epilepsy should be considered for some form of surgery because even if they're not candidates for a curative surgery, there may be some palliative options, whether it's surgical resections that lessen the severity of their seizures or neurostimulation devices that reduce the frequency and severity of seizures. Ideal candidates, the ones that you would push through sooner rather than later, are those who have the likelihood of the best outcomes and the least risk of neurocognitive decline. Dr Monteith: So, you mentioned that there may be other candidates that still benefit, although maybe not ideal. You mentioned neuromodulation. What other interventions are available? Dr Friedman: For patients who are not candidates for resective surgery, there are several neurostimulation options. There's vagus nerve stimulation, which has been around the longest. It is a device that is implanted in- under the skin near the clavicle and has a lead that goes to the left vagus nerve and delivers stimulation, electrical stimulation to the nerve. For reasons we don't fully understand, it can reduce the both the frequency and severity of seizures. Seldom does it make people seizure free, but the reduction in seizure frequency for many patients is associated with improved quality of life, reduced risk of injury, and even reduced rates of SUDEP. We also have two intracranial neurostimulation devices we use for epilepsy. One is the responsive neurostimulator. So, this is a device that- it has leads that are implanted directly into the seizure focus and sense electrocortical brain activity and deliver electrical stimulation to attempt to abort abnormal brain activity. So functioning kind of like a cardiac defibrillator for the heart, but for seizures in the brain. And because these devices have two leads, they can be used to treat people with more than one seizure focus---so up to two---or be used in patients who are not candidates for resection because their seizure focus is in language cortex, motor cortex, things that would be unable to resect. And the RNS has somewhat better efficacy in terms of percent reduction in seizures compared to the VNS, but obviously because it's an intracranial device, it's also a little riskier. It has more potential for neurosurgical adverse effects. There's also a deep brain stimulator for epilepsies, the same exact device that we use to treat movement disorders. We can implant in the thalamus, in either the anterior nucleus of the thalamus or now, for some patients, into the central median nucleus of the thalamus, and deliver open loop stimulation to treat epilepsy and reduce the frequency and severity of seizures as well. Unlike the RNS, you don't have to localize the seizure focus, so you don't need to know exactly where the seizures are coming from. And you could treat patients with multifocal epilepsy with seizures coming from more than two locations or even generalized seizures. Dr Monteith: So, it sounds like there are a lot of options available to patients. I think one of the things I find challenging is when we have patients that may have some cognitive dysfunction, especially in the hospital, and they've had some seizures that are very obvious, but then there are these, maybe, events that you wonder are seizures. So, what is the utility of some of these seizure detection devices? Dr Friedman: The development of seizure detection devices started out primarily with the observation that a majority of cases of sudden unexpected death and epilepsy, or SUDEP, occurred following tonic-clonic seizures. And there was a need to be able to monitor for convulsive seizures, especially that occur at night when people were otherwise unattended. And so, the first generation of devices that were developed came on the market, essentially detected convulsive seizures, and they alerted caregivers nearby who are able to come to the bedside, provide basic seizure first aid, turn people on the side. And theoretically all this---this hasn't been shown in studies---prevents SUDEP. And so, the ones that are currently available on the market are focused on the detection of convulsive seizures, mostly generalized tonic-clonic seizures, but some devices can also detect other seizures with very prominent motor components. What we don't have yet available to us, and what people are working on, are devices that detect nonconvulsive seizures. We know that patients who have focal impaired aware seizures are often amnestic for their seizures. They don't know they had a seizure if family members aren't there to observe them. They may never report them, which makes treating these patients very difficult. How do you quantify disease burden in your headache patients, for instance? You say, how many headache days did you have since we last met in the clinic? Your patients will be able to report on their calendar, this many days. Well, imagine if the patients had no awareness of whether or not they had a headache day. You wouldn't know if your therapy is working or not. In epilepsy, we need those types of devices which can tell us whether patients are having seizures they're unaware of, and that may be more subtle than convulsions. Dr Monteith: Oh, that'd be great for headache, too. You just gave me an idea, but that's the next podcast. So, you mentioned SUDEP, really important. How good are surgical interventions at reducing what we would think the prevalence of SUDEP? Dr Friedman: For me that is one of the primary motivations for epilepsy surgery in patients who are drug-resistant, because we know that if patients who are candidates for epilepsy surgery have high SUDEP rates. Estimates range from six to nine per thousand patients per year. If surgery is successful, their mortality rates go down to the general population level. It literally can be lifesaving for some patients, especially when you're talking about curative epilepsy surgery. But we also know that the biggest driver for SUDEP risk is tonic-clonic seizures and the frequency of those tonic-clonic seizures. So even our palliative interventions, which can reduce the frequency and severity of seizures, may also reduce the risk of SUDEP. So, we know in study- observational studies of patients with VNS and with RNS, for instance, the rates of SUDEP in patients treated with those devices are lower than expected for the drug-resistant epilepsy population. Dr Monteith: Let's talk a little bit about some of these prediction models. And you have a lot of great work in your article, so I don't want to get into all the details, but how do you use that in the real world? Do you communicate that with patients? How do you approach these prediction factors? Dr Friedman: There are two places where, I think, clinical prediction tools for epilepsy surgery have a role. One is, for me, in my clinic where I'm talking to patients about the risks and benefits for surgery, right? You want to be able to accurately communicate the likelihood that the surgery is going to give you the desired outcome. So patients and their families can make educated decisions, be weighing the risks and benefits. I think it's important to be realistic with patients because surgery, like- you know, any surgery is not without risk, both acute risks and long-term risks. You're removing part of the brain, and, you know, every part of the brain is important. That's where I use prediction tools. But I think it's also important for the general neurologist, especially trying to triage which patients you are going to be aggressive with referring to a comprehensive epilepsy center for evaluation. Where you may use your limited time and capital with patients to counsel them on surgical treatments. Where a healthcare system with limited resources prioritizes patients. So, there's a significant need for having prediction tools that only take the input that a general neurologist seeing a patient in the clinic would have at hand. You know, the history, an MRI, an interictal EEG. Dr Monteith: I guess part of that prediction model includes adverse outcomes that you're communicating as well. Dr Friedman: Certainly, for me, when I'm discussing surgery for the patient in front of me, I will use prediction models for adverse outcomes as well that are informed by the kind of surgery we're proposing to do, especially when talking about things like language dysfunction and memory dysfunction after surgery. Dr Monteith: So, you mentioned a lot of great advances, and certainly since I was a resident, which wasn't that long ago. Why don't you tell me how some of these interventions have changed your clinical practice? Dr Friedman: Thinking about epilepsy surgery, like other surgical specialties, there's been a move to more minimally invasive approaches. For instance, when I started as an epilepsy fellow fifteen years ago, sixteen years ago, most of our surgeries involve removing a large portion of the skull, putting electrodes on the brain, doing resections through big craniotomies which were uncomfortable and risky, things like that. We now do our phase two or intracranial EEG monitoring through small burr holes in the brain using robotically placed electrodes. For many of our patients, we can actually treat their epileptic focus with a laser that is targeted through a small catheter and MRI guidance. And patients are usually home in two days with, you know, a lot less discomfort. Dr Monteith: Well, that's great. I didn't expect that one, but I do think that translates to many areas of neurology. Really just this idea of meeting their goals and personalizing their care. My last question is, what out of these advances and what you know about the future of epilepsy, what makes you the most excited and what gives you the most hope? Dr Friedman: I think there are a lot of exciting things in epilepsy. Last count I heard, there's something like over a hundred biotech companies developing epilepsy therapies. So that gives me hope that people are still interested in meeting the unmet needs of patients with epilepsy. And some of these therapies are really novel. For instance, there's a trial of stem cell treatments for drug-resistant temporal lobe epilepsy that's ongoing now, where inhibitory interneuron progenitor cells are implanted in the brain and kind of restore the brain circuit disruptions that we see in some of these epilepsies. There are combinations of drug and device therapies or gene therapy and device therapies that are in development, which have a lot of promise, and I think we'll have much more precise and targeted therapies within the next decade. Dr Monteith: Awesome. I really appreciate our conversation, and thank you so much for your wonderful article. I learned a lot reading it. Dr Friedman: Thank you. Dr Monteith: Today I've been interviewing Dr Daniel Friedman, whose article on surgical treatments, devices, tools, and non-medication management of epilepsy appears in the most recent issue of Continuum on epilepsy. Be sure to check out Continuum audio episodes from this and other issues. And thank you to our listeners for joining today. Dr Monteith: This is Dr Teshmae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

Sharp Waves spoke with a neurologist and a cardiologist who are part of a team researching the interactions among seizures, heart function, heart health, and SUDEP. Learn more about their research.Selected publications from Drs. Lin & Fialho and colleagues:Determining factors of electrocardiographic abnormalities in patients with epilepsy: A case-control study (2017, Epilepsy Research)Maximal/exhaustive treadmill test features in patients with temporal lobe epilepsy: Search for sudden unexpected death biomarkers (2017, Epilepsy Research)Echocardiographic risk markers of sudden death in patients with temporal lobe epilepsy (2018, Epilepsy Research)Increased cardiac stiffness is associated with autonomic dysfunction in patients with temporal lobe epilepsy (2018, Epilepsia) Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.Let us know how we're doing: podcast@ilae.org.The International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, X (Twitter), Instagram, and LinkedIn.

Health Correspondent Fergal Bowers speaks to Tina and Katie Young about the death of their daughter and sister Louise from Sudden Unexplained Death in Epilepsy and Dr Yvonne Langan, Neurophysiologist at St James Hospital, discusses the findings of a new study into SUDEP.

In this episode, we talk about Sudden Unexpected Death in Epilepsy (SUDEP). Sadly, almost 300 people a year die due to epilepsy in Scotland.Ahead of SUDEP Action Day on Wednesday 16 October, we talked to Sammy Ashby, Chief Executive at SUDEP Action.We discussed the work that SUDEP Action does to help bereaved families and this year's #OurRisksOurRights campaign, which looks to highlight that every person living with epilepsy has a right to be told about the risks that come with the condition.

In this episode, I use illustrative patient memoirs to discuss its diverse and deceptive causes and manifestations. I also use historical stories, such as that of composer George Gershwin, to illustrate the challenge of making a diagnosis of seizures. I also explore the manifold mimics of epilepsy, particularly exploring how fainting can easily be mistaken for an epileptic event. The podcast also goes back in history to trace the first documentation of epilepsy and the revolutionary impact of English neurologist John Hughlings Jackson in our understanding of the disease, and the work of William Gowers in elucidating the nature of epileptic auras. I also review the complications of epilepsy such as sudden death in epilepsy, SUDEP.

In observance of Sudden Unexpected Death in Epilepsy (SUDEP) Action Day on October 16th, we speak with the Maffie family about the tragic loss of Anthony Maffie to SUDEP and their advocacy and fundraising efforts in Anthony's honor. The post Overcoming Seizures to Pursue a Neuroscience Degree and Help Others Living with Epilepsy appeared first on CURE Epilepsy.

As part of the 2024 Developmental Disabilities Conference, Dr. Danilo Bernardo, Assistant Professor of Neurology at UCSF, discusses novel treatment options for children, youth and adults with intractable seizures, especially to prevent SUDEP (sudden unexpected death in epilepsy). Epilepsy devices, including wearables, video systems and apps, can be used to improve data gathering and trigger alarms. Advances in treatment range from epilepsy surgery to vagal nerve stimulation and responsive neurostimulation system. Series: "Developmental Disabilities Update" [Health and Medicine] [Show ID: 39748]

As part of the 2024 Developmental Disabilities Conference, Dr. Danilo Bernardo, Assistant Professor of Neurology at UCSF, discusses novel treatment options for children, youth and adults with intractable seizures, especially to prevent SUDEP (sudden unexpected death in epilepsy). Epilepsy devices, including wearables, video systems and apps, can be used to improve data gathering and trigger alarms. Advances in treatment range from epilepsy surgery to vagal nerve stimulation and responsive neurostimulation system. Series: "Developmental Disabilities Update" [Health and Medicine] [Show ID: 39748]

As part of the 2024 Developmental Disabilities Conference, Dr. Danilo Bernardo, Assistant Professor of Neurology at UCSF, discusses novel treatment options for children, youth and adults with intractable seizures, especially to prevent SUDEP (sudden unexpected death in epilepsy). Epilepsy devices, including wearables, video systems and apps, can be used to improve data gathering and trigger alarms. Advances in treatment range from epilepsy surgery to vagal nerve stimulation and responsive neurostimulation system. Series: "Developmental Disabilities Update" [Health and Medicine] [Show ID: 39748]

This week the Lautners have the honor of sitting down with Victor and Libby Boyce, parents of child star Cameron Boyce, who passed away in 2019 from SUDEP (Sudden Unexpected Death in Epilepsy). They offer an inside look at the incredible life Cameron led and the legacy he left behind. They explain how and when epilepsy became part of their lives and how Cameron wasn't considered epileptic until his second seizure. This is one of their many frustrations with the medical system, which failed to arm them. Their main message in coming on the podcast today is to take an epilepsy diagnosis seriously. There is a lack of information about epilepsy, despite there being so many different types and it being one of the most common neurological conditions. They were never even informed of SUDEP, the complication that took their son's life. They talk about The Cameron Boyce Foundation, with the mission of raising awareness of epilepsy, discuss their grieving process, share what the outpouring of love has felt like, and offer advice on what to say to someone who has lost a loved one.   Cameron lives on through his sister, parents, friends, and The Cameron Boyce Foundation. We urge other people of influence to speak out if they suffer from epilepsy, and encourage you to check out the foundation to learn more about the disorder: www.thecameronboycefoundation.org  Thanks to our awesome sponsors for supporting this episode:  GreenChef — Go to GreenChef.com/60thesqueeze and use code 60thesqueeze to get 60% off plus free shipping  Earth Breeze — Subscribe to Earth Breeze and save 40%! Go to earthbreeze.com/thesqueeze   Jenni Kayne — Find your forever pieces @jennikayne and get 15% off with promo code THESQUEEZE at jennikayne.com/THESQUEEZE! #jennikaynepartner  Fast Growing Trees — Get 15% off your entire order when you go to FastGrowingTrees.com/THESQUEEZE, but only through OCTOBER 15TH  To email us your questions or share your story, you can reach out to lautner.thesqueezepodcast@gmail.com. Be sure to rate, review, and follow the podcast so you don't miss an episode! Plus, follow us on Instagram, @thesqueeze and personally @taylautner and @taylorlautner + on TikTok @thesqueezepodcast  To learn more from The Lemons Foundation, follow @lemonsbytay on Instagram and visit lemonsbytay.com  Learn more about your ad choices. Visit megaphone.fm/adchoices

Episode 721 - Victor Boyce is a First Class Father and founder of The Cameron Boyce Foundation.  Victor's son Cameron Boyce tragically passed away from Sudden Unexpected Death in Epilepsy Patients.  Cameron, a world famous TV/Movie star who only had 5 seizures in his lifetime before his death from SUDEP in 2019 at the age of 20.   In this Episode, Victor shares his Fatherhood journey which includes his late son Cameron and his daughter Maya.  He discusses the importance of funding Epilepsy research and the lack of knowledge about Epilepsy despite the fact that 1 in 26 people have it and can develop it at ANY AGE in life making it the most common neurological disease.  He describes the painful loss of his son and how his daughter has been a blessing to him throughout the process of grieving for Cameron.  He talks about his discipline style with his kids growing up.  He offers some great advice for new or about to be dads and more! The Cameron Boyce Foundation  - https://www.thecameronboycefoundation.org Navy SEAL Swim Fundraiser - https://impact.navysealfoundation.org/fundraiser/4796365 The Alec Lace Show - https://linktr.ee/TheAlecLaceShow My Pillow - https://mystore.com/fatherhood Promo Code: Fatherhood  First Class Fatherhood: Advice and Wisdom from High-Profile Dads - https://bit.ly/36XpXNp Watch First Class Fatherhood on YouTube - https://www.youtube.com/channel/UCCD6cjYptutjJWYlM0Kk6cQ?sub_confirmation=1 More Ways To Listen - https://linktr.ee/alec_lace Follow me on instagram - https://instagram.com/alec_lace?igshid=ebfecg0yvbap For information about becoming a Sponsor of First Class Fatherhood please hit me with an email: AlecLace@FirstClassFatherhood.com

Hundreds of deaths from epilepsy could be prevented every year if the condition was managed properly - according to the founder of a British charity.In the UK, at least 1,000 people with epilepsy die each year.  In this powerful and informative podcast, journalist Angela Walker sits down with Jane Hanna OBE from SUDEP Action, who says many of these deaths could be prevented if changes were made in by the NHS,  in local healthcare management and if care for the the condition was properly funded  by the government.Having lost her partner to sudden death in 1990, Jane is passionate about preventing such tragedies and shedding light on the often under-reported issue of sudden unexpected death in epilepsy .Jane shares her personal experience and reveals that every week, around 21 families face the same devastating loss. SUDEP occurs when an individual diagnosed with epilepsy or experiencing seizure-related episodes suddenly passes away, usually during sleep, with no prior warning signs. Angela and Jane delve deeper into the risk factors associated with SUDEP and discuss the importance of raising awareness among medical professionals and the public.The discussion also explores the challenges faced by the medical community in managing epilepsy cases and calls for a change in protocols to prioritise early diagnosis and intervention. Jane explains about the SUDEP app which can help patients and medics manage the condition better.The podcast delves into the alarming rise in maternal deaths related to epilepsy and discusses the potential link with certain antiseizure medications. Jane highlights the importance of specialized communication and counselling for pregnant women with epilepsy,.Join Angela Walker and Jane Hanna as they bring this critical issue to the forefront, sharing inspiring stories and insights from individuals and families impacted by epilepsy. Through awareness, understanding, and collaborative efforts, they believe that many of these heart-wrenching deaths can be prevented, paving the way for a safer future for those living with epilepsy.#EpilepsyAwareness #SUDEPAction #PreventEpilepsyDeaths #HealthcareChange #EpilepsyManagement #RaisingAwareness #EpilepsyPodcast #MedicalCommunity #EarlyDiagnosis #SUDEPApp #MaternalHealth #PregnancyAndEpilepsy #CollaborativeEfforts #SaferFutureSupport the showhttps://www.angelawalkerreports.com/

Do patients want information about SUDEP? When do you give it? Does information help reduce SUDEP deaths?    Credit available for this activity expires: 8/3/2024 Earn Credit / Learning Objectives & Disclosures: https://www.medscape.org/viewarticle/995044?ecd=bdc_podcast_libsyn_mscpedu

Sudden Unexpected Death in Epilepsy (SUDEP) affects about one out of every 1.000 people with epilepsy.  Despite its rarity, SUDEP is important to discuss, but some physicians are wary of having the conversations. Dr. Emma Carter spoke with Dr. Suvasini Sharma about SUDEP, why it's important to inform patients and families about it, and how to manage risk factors.The greatest risk factor for SUDEP is uncontrolled generalized tonic-clonic seizures (previously called grand mal seizures). Nocturnal seizures and certain comorbidities, such as developmental delay, also are risk factors.SUDEP information for families from the ILAE (ilae.org) Relevant articles:Sudden Unexpected Death in Epilepsy (SUDEP) - What pediatricians need to know Garg D, Sharma S, 2020Effect of counselling of parents of children with epilepsy focusing on sudden unexpected death in epilepsy Kumari S, et al., 2022Counseling about sudden unexpected death in epilepsy (SUDEP): A global survey of neurologists' opinions Asadi-Pooya AA, et al., 2022  The International League Against Epilepsy invites you to explore the ILAE Academy: Interactive, practice based online courses for health care professionals who diagnose and treat epilepsy. Find more information at ilae-academy.org. Support the showSharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.The International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Twitter, and Instagram.

Dr. Adam Greenblatt discusses how to counsel patients about sudden unexpected death in epilepsy (SUDEP). This podcast is sponsored by argenx. Visit www.vyvgarthcp.com for more information.

Dr. Adam Greenblatt discusses the attributes and causes of sudden unexpected death in epilepsy (SUDEP). This podcast is sponsored by argenx. Visit www.vyvgarthcp.com for more information.

Dr. Adam Greenblatt discusses sudden unexpected death in epilepsy (SUDEP). This podcast is sponsored by argenx. Visit www.vyvgarthcp.com for more information.

In this episode Dr. Audrey Nath speaks with Victor and Libby Boyce, the parents of actor Cameron Boyce who passed away in 2019 from sudden unexpected death in epilepsy (SUDEP). Victor and Libby discuss Cameron's passion for performing and philanthropy as well as his epilepsy diagnosis that led to SUDEP—a rare complication of epilepsy. Victor and Libby also talk about The Cameron Boyce Foundation, an organization established to raise awareness about SUDEP and to fund epilepsy research. Next Dr. Nath talks to Dr. Alica Goldman, epileptologist and professor of neurology at Baylor College of Medicine. Dr. Goldman discusses epilepsy genetics and SUDEP and provides information about various therapies and resources. Additional Resources: https://www.thecameronboycefoundation.org/ awareness/https://www.brainandlife.org/articles/cameron-boyce-foundation-launches-new-epilepsy-initiative https://www.brainandlife.org/disorders-a-z/epilepsy/ https://www.aesnet.org/ https://www.epilepsy.com/ Social Media:   Guest: The Cameron Boyce Foundation @thecameronboycefoundation (Instagram) Libby Boyce @libboyce (Instagram); Victor Boyce @thevictorboyce (Instagram) Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Audrey Nath @AudreyNathMDPhD

Padmaja Kandula, M.D. discusses what patients should know about SUDEP (Sudden Unexpected Death in Epilepsy). She reviews the recent developments with treating seizures and epilepsy and how people can manage the conditions. She notes how the prevalence of certain risk factors and uncontrolled severe types of seizures in certain populations can impact the likelihood of SUDEP. Finally, she highlights the multidisciplinary care and treatments available through the Epilepsy Center at Weill Cornell MedicineTo schedule with Padmaja Kandula, M.D

This week on Seizing Life® we welcome Hannah Whitten to the podcast. Hannah's older brother Dylan lived with epilepsy nearly his entire life, until he passed away from SUDEP at the age of 25. Though she was 5 years younger, Hannah was a constant companion to Dylan as they grew up and was often his main caregiver. She tells us about her brother's attitude and determination not to let epilepsy define or limit his life, attending and graduating from college, working, and eventually living on his own. Hannah also talks about her experiences having a sibling with epilepsy and the impact that epilepsy has had on their family. The post Remembering a Brother Lost to SUDEP and Finding Hope in Community appeared first on CURE Epilepsy.

Are you grieving and desperate for people to understand how you really feel?    After author Gwendolyn Burton's 26-year old son died suddenly from an epileptic seizure, no one around her could say anything to help her feel better. She's spent years working through the grieving process and has captured her journey and the lessons learned in her new book “You Don't Know Just How I Feel”.    During our conversation, Gwendolyn explains why we should never tell a grieving person, “I know just how you feel.” Grief is so personal, but in this episode, Gwendolyn shares practical boundaries, grief self-care, how to handle social media as well as how to find hope after devastating loss.    RESOURCES FROM THIS EPISODE gwendolynoburton.com You Don't Know Just How I Feel   ABOUT OUR SPECIAL GUEST After three miscarriages and an adult son who passed away from sudden unexpected death in epilepsy (SUDEP), Gwendolyn Burton is uniquely qualified to help others navigate their grief journey by discussing common challenges and misconceptions. She studied with grief expert David Kessler, founded Sisters in Solace (SiS), a support group for mothers of child loss, and is a Certified Grief Educator. Gwendolyn enjoys physical fitness and lives in Aurora, Colorado, with her husband, son, and three dogs.

I hope you will listen as Caren Coleson shares about her grandson, Jax, and his battle with epilepsy. Caren is also sharing about the Walk to End Epilepsy tomorrow. In spite of the loss of his life to SUDEP, the Coleson family has found ways to honor Jax's legacy, including his two brothers, Liam and Royce. Listen and share.

I hope you will listen as Caren Coleson shares about her grandson, Jax, and his battle with epilepsy. Caren is also sharing about the Walk to End Epilepsy tomorrow. In spite of the loss of his life to SUDEP, the Coleson family has found ways to honor Jax's legacy, including his two brothers, Liam and Royce. Listen and share.

CURE Epilepsy Board Member Hannah Whitten shares her experiences growing up with a brother with epilepsy and the tragedy of losing him to SUDEP. The post Remembering a Brother Lost to SUDEP and Finding Hope in Community appeared first on CURE Epilepsy.

Welcome to the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. In this episode, we spoke with Christopher Elder, MD, clinical assistant professor of neurology, Comprehensive Epilepsy Center, NYU Langone Health. He joined the show to talk about the latest updates in the care of patients with epilepsy, the clinical therapeutic pipeline developments on the horizon, and the need to continue stressing conversations around sudden unexpected death in epilepsy (SUDEP). Episode Breakdown: 1:15 – The rise of neurostimulation in epilepsy care 4:00 – Increasing implantation of minimally invasive options 5:15 – Patient reception to nontherapeutic approaches 7:45 – The impact of cenobamate (Xcopri; SK Life Science) on the paradigm 10:35 – Managing refractory epilepsy 12:00 – Upcoming options for those with generalized epilepsy 13:50 – Neurology News Minute 18:30 – Path forward for gene and cell therapies in epilepsy 21:00 – The need to improve early recognition of epilepsy 25:20 – Standardizing questionnaires and information for epilepsy 27:00 – The need to continue discussing SUDEP This episode is brought to you by the Medical World News streaming service. Check out new content and shows every day, only at medicalworldnews.com The stories featured in this week's Neurology News Minute, which will give you quick updates on the following developments in neurology, are further detailed here: FDA Approves Midazolam Autoinjector for Status Epilepticus Sirolimus Topical Gel Available for Facial Angiofibroma Associated With Tuberous Sclerosis Complex FDA Lifts Hold on Phase 2 Trial of SRP-5051 in DMD Amenable to Exon 51 Skipping Philips Respironics Recalls Masks for BPAP and CPAP Machines After Safety Concerns FDA Advisory Committee Votes to Recommend AMX0035 for Treatment of ALS Thanks for listening to the NeurologyLive® Mind Moments® podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com.

This week on Seizing Life we present personal stories of three key areas of epilepsy research: Post-Traumatic Epilepsy, SUDEP, and Drug-Resistant epilepsy. The post Epilepsy Stories and the Research Making a Difference appeared first on CURE Epilepsy.

Sometimes, it feels like the world is really big and at other times, it feels really small. When I first spoke with today's guest, Jen, the world actually felt quite tiny. She is from my home state of Iowa and lives in the town where I went to college, beautiful Decorah, Iowa. She graduated a year ahead of me and we even have two mutual friends - Sarah a friend from high school, and Meredith, one of my best friends from college. This is amazing enough, but even more precious to me is the timing of this introduction. You see, Sarah introduced Jen to the podcast about two years ago. Meredith knew about our similar stories from the first days after Andy died, but she did not introduce us until now. Why would that be? What triggered Meredith to connect us now?  I feel like Meredith must have been nudged by God at just the right moment in time. I certainly always would have appreciated talking to her and our shared experiences, but honestly, I needed to talk to her now. Brendan died shortly after graduating from high school, 105 days into his freshman year of college, to be exact. Right now, in my life, I find myself constantly thinking about what ‘should be' happening. We should have just celebrated Andy's 18th birthday. We should be 2 weeks from his graduation from high school. We should be starting to buy things for his dorm room as we prepare to send him to college. Every graduation announcement is a trigger. Innocent conversations at work about graduation parties make me want to burst into tears. I seem to be experiencing trigger after trigger over the past few weeks. Now, at this moment in time, because of Sarah and Meredith, Jen is here for me. Brendan did graduate from high school and even started college, but then suddenly died in his sleep from a seizure. Jen appreciates those precious memories in ways that other moms just can't. These are some of her last memories of her son so she truly understands the longing that I have right now. So today I say, “Thank you, Sarah. Thank you, Meredith. And finally, thank you, Jen. Thank you for listening. Thank you for understanding and thank you for bringing a bit of Iowa home to me at just the right moment.

When Monica's daughter, Zoey, suddenly died on her 5th birthday on a trip to Disney World, she did not know how she could go on. How could she continue to be a good mother to her other daughter, a wife to her husband? As a physician, how could Monica continue to care for her patients? I feel so drawn to Monica today, because I, too, struggled with those same thoughts. I would find myself wondering if I could not save Andy, did I have any business trying to treat other patients? If I 'let him down,' was it possible that i would let others down as well? On the surface, I could see that these are not rational questions, but inwardly, they would still sneak in. Is there a magic answer to continuing to live after devastating loss? In some ways, the answer is definitely 'no', but at other times, I would say the answer to living each day is to simply do it 'one day at a time.' Trying to think too far ahead can be overwhelming, but taking things minute by minute and day by day is truly the key. This is how we all must survive. Today, Monica relates her 'secret' to surviving the last months since Zoey died. That secret is to collect little 'nuggets' of wisdom from other people who love her, grasping new ones to give her daily comfort. One such nugget that she has recently been clinging to is to think, 'Every day that I make it, I am one day closer to Zoey.' It is so easy for us to count the days since we lost our children. We know the date. It is written on a tombstone at the cemetery, but if we think of things differently, it changes our perspective. It is a fact that each day we live brings us one day closer to unification and not just one day further from loss. Somehow, that thought gives me just a little bit more peace to live each day.

Join Jimbo, 80's E, and the Emery family as they talk about their son Connor, who passed away suddenly due to SUDEP. Happy 21st Birthday Connor! See acast.com/privacy for privacy and opt-out information.

This is the 3rd of 4 episodes of Heart Dad Sunday -- a mini-series developed for Heart Month, February 2022. Heart Dad Frank Jaworski returns in this episode as the Guest Host. He interviews long-time friend, Michael Liben, about what it was like to raise a daughter with a critical congenital heart defect in Israel. Not only did Michael's daughter have double-outlet right ventricle, but she also had autism and she later developed epilepsy as well. Michael is the father of three children: 27-year old Idan, 25-year-old Sapir, and forever 15-year old Liel. Michael and Leora have been married for 34 years and Michael made aliyah to Jerusalem after college.Michael was a former filmmaker, high school teacher, adjunct professor of television and radio production, and he now works in security. For almost 6 years Michael has been working with Frank's wife, Anna, as the Host of a bereavement podcast now entitled, “Bereaved But Still Me.”Links to Michael's other appearances on "Heart to Heart with Anna"Congenital Heart Defects Around the Globe: IsraelLiel and Her Many Gifts: A Family's Decision to Donate One Girl's Lungs, KidneysMichael and Jamie: An Interview with an Organ Recipient and Donor's DadLink to Michael's podcast -- Bereaved But Still MePlease visit our Social Media and Podcast pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsiteAnna's Buzzsprout Affiliate Link (we both benefit if you sign up with Buzzsprout with my link - yay!) Support the show (https://www.patreon.com/HearttoHeart)

Our Neuropsychologists, Dr. Laura Jansons Dr. Skip Hrin, AND Neurofeedback legend Jay Gunkelman review and discuss: The Surgeon General's Warning Report re: Mental Health of our Children The Death of 33-year-old former NFL Wide Receiver Demaryius Thomas from SUDEP "Signal In the Noise" the Documentary about our own Jay Gunkelman Sleep Hygiene See bottom of the page for the plethora of links discussed today We thank our Patreon Supporters: https://www.patreon.com/NeuroNoodleFeatured Business: Outrageous Baking, Tor Talk, Joshua M of Alternative Brain Therapy, and MARA https://www.outrageousbaking.com/ https://tortalk.se/?lang=en https://neurofeedbackcare.com/ "EEG and Me". "Sandhya M", "Johnathan January-Turrall", "Rowan January-Turrall" Have an idea for a topic or guest? pete@neuronoodle.com Jansons.com DrSkipHrin.com Some of the Links Discussed in the show: (go easy on Pete its hard to keep up with Jay) https://www.nanonline.org/nan/ https://nanonline.org/nan/Education_Events/Annual_Conference/NAN/_ContinuingEducation/_Conference/2021_DC/2021_Conference.aspx?hkey=e4c298c1-b18c-4323-af16-9679f933ba64 https://en.wikipedia.org/wiki/Acetylcholine https://www.health.harvard.edu/blog/common-anticholinergic-drugs-like-benadryl-linked-increased-dementia-risk-201501287667 https://en.wikipedia.org/wiki/Suprachiasmatic_nucleus https://www.sleepfoundation.org/circadian-rhythm-sleep-disorders#:~:text=A%20delayed%20circadian%20rhythm%20can,an%20early%20wake%2Dup%20time. https://www.epilepsy.org.uk/info/syndromes/electrical-status-epilepticus-during-slow-wave-sleep-esess https://www.healthline.com/health/epilepsy/intractable-epilepsy#what-is-it https://www.gofundme.com/f/the-release-of-the-gunkelmentary https://www.stens-biofeedback.com/mary-tracy https://www.imdb.com/title/tt13181022/ https://www.bfi.org.uk/ https://fargofilmfestival.org/index.php/about/ https://www.rehobothfilm.com/event/festival/ --- Send in a voice message: https://anchor.fm/neuronoodle/message Support this podcast: https://anchor.fm/neuronoodle/support

On this episode of Seizing Life, we speak with former CURE Grantee and the Director of the Comprehensive Epilepsy Program at The Hospital for Sick Children in Toronto Dr. Elizabeth Donner about all aspects of SUDEP. The post SUDEP: What To Know and What To Do appeared first on CURE Epilepsy.

In observance of SUDEP Action Day on Wednesday, October 20, we speak with Dr. Elizabeth Donner about all aspects of SUDEP (Sudden Unexpected Death in Epilepsy). In this thorough and thoughtful discussion, Dr. Donner explains what SUDEP is, what we The post SUDEP: What To Know and What To Do appeared first on CURE Epilepsy.

n August of 2020, Geoff Applegate lost his fiancé Zsatara to SUDEP just weeks before the couple was to be married. Geoff shares his ongoing journey through the grieving process including what he has personally found helpful, what he's learned about helping his son cope with the loss, and how he keeps Zsatara's memory alive by raising awareness about SUDEP. The post After SUDEP: A Journey of Grief and Hope appeared first on CURE Epilepsy.

After the loss of his fiancé to SUDEP, Geoff Applegate a single-parent was left coping with his own grief while also learning how to help his young son understand the loss of his mother. The post After SUDEP: A Journey of Grief and Hope appeared first on CURE Epilepsy.

On this episode of Seizing Life, Libby Boyce and Jessica Brandes, two mothers who each lost a son to SUDEP, discuss how they hope to transform tragedy and grief into action and change. The post Speaking Up About SUDEP: Two Mothers' Stories appeared first on CURE Epilepsy.

In this episode, we stare down the monster that has plagued our Epilepsy community for decades, SUDEP, or SUdden Death from EPilepsy. We present three tragic stories of SUDEP. In the United States, there are 55 (and 1 in the UK) thousand Epilepsy-related deaths in the United States each year. […] The post 026: Mortality appeared first on Brain Ablaze.