Podcasts about boston children

It's Rare Disease Week! And the Boston Globe held its second annual Rare Disease Summit, shining a spotlight on the 30 million people living with a rare disease in the US. In this BONUS live recording of Say More, we talk to Boston Children's Hospital head of pediatrics Dr. Wendy Chung about strides in newborn genetic screening, and Bob and Bobby Coughlin, a father and son whose lives have been transformed by a breakthrough cystic fibrosis drug that's changing the outlook for people with the disease. Email us at saymore@globe.com.  To sign up for the Boston Globe Events newsletter, click here.

Autism, Functional Medicine, and Personalized Interventions: A Conversation with Theresa Lyons, PhD, a Yale-trained scientist and medical strategist who became an autism expert after her daughter's diagnosis and now runs AWEtism.net. Lyons describes dissatisfaction with conventional guidance that offers limited drugs for irritability and primarily ABA (Applied Behavioral Analysis), which is insurance-covered, often recommended at 40 hours/week, uses extrinsic rewards, and may help some skill-learning but has controversies and limitations for social development; she contrasts newer approaches such as RDI (Relationship Development Intervention) and PRT (Pivotal Response), which aim to build intrinsic motivation but are typically not covered by insurance. The discussion covers autism heterogeneity, changes in diagnostic categories (e.g., Asperger's folded into autism), and research including a Boston Children's Hospital study reporting 37% of children in a cohort lost their autism diagnosis over time (diagnosis based on observation). Lyons addresses debates about rising autism prevalence, noting multiple potential contributors and rejecting single-cause explanations, while citing risk-factor examples such as family autoimmune history and air pollution exposure. She outlines a functional medicine “why” approach using constipation as an example (root causes vs. symptomatic treatment), and emphasizes basic, low-risk steps such as evaluating diet, inflammation, hydration/electrolytes, and blood work for nutrients. Specific topics include gluten-free approaches (mechanisms involving gut permeability, immune burden, and CNS effects), dairy/inflammation, vitamin D deficiency and monitoring, melatonin as a well-studied short-term aid in autism (considered safe for a couple of years in studies) while still seeking underlying causes, and omega-3 fatty acids for focus and inflammation. Lyons explains leucovorin (folinic acid, prescription vitamin B9) as a targeted approach for children with folate receptor antibodies (reported in ~70% of autistic children), discusses the value and cost (~$300) of specialized testing from one U.S. lab, and notes reports of major speech and behavior improvements in responders, with dosing nuances. The episode also reviews evidence and cautions around the microbiome, including fecal microbiota transplant (FDA-approved for C. difficile; discussed as having an ~80% response rate in autism-related studies when gut issues are a key driver, but with major donor/compatibility considerations) and probiotics (some small trials and high costs). Other themes include “clean eating,” organic foods and toxin-load considerations tied to genetic detoxification vulnerabilities, discussion of acetaminophen/Tylenol in pregnancy in the context of glutathione pathways and personalized risk, and using genetics to guide interventions. Lyons warns that analysis of top autism TikTok videos found ~70% were inaccurate or overdramatized, recommending social media only for ideas, not decision-making. She also highlights parent stress, citing emerging research on increased PTSD risk among autism parents, and emphasizes support and community. Lyons advises parents to understand their child's specific health drivers and match them to appropriately specialized clinicians, noting her curated doctor listings in The Lyons Report.

In this World Shared Practice Forum Podcast, Dr. Robert Tasker, Editor-in-Chief of the journal Pediatric Critical Care Medicine, discusses strategies for successful scholarship in pediatric critical care with a lens towards fellows and junior faculty. In discussion with co-hosts, Drs. Ruth Riedl and Katherine Rosengard, Dr. Tasker reviews clinical reports, effective engagement with the literature, and the role of mentorship in academia. He shares insights on pivotal themes in pediatric critical care literature, encouraging clinicians to engage actively with published research and contribute to evidence-driven practice. LEARNING OBJECTIVES - Recognize the significance of structured clinical research reports in pediatric critical care - Develop strategies for effective engagement with and utilization of medical literature - Identify the role of mentorship in academic scholarship and career development - Review the importance of the audience in academic projects and the implications for publication AUTHORS Robert Tasker, MBBS, MD Editor-in-Chief, Pediatric Critical Care Medicine Senior Associate in Critical Care Medicine, Department of Anesthesiology, Critical Care and Pain Medicine Boston Children's Hospital Professor of Anesthesia Harvard Medical School College Lecturer in Medicine and Graduate Tutor Selwyn College, University of Cambridge Ruth Riedl, MD Chief Fellow, Pediatric Critical Care Medicine Boston Children's Hospital Katherine Rosengard, MD, MBA Chief Fellow, Pediatric Critical Care Medicine Boston Children's Hospital Traci Wolbrink, MD, MPH‌ Senior Associate in Critical Care Medicine; Department of Anesthesiology, Critical Care and Pain Medicine Boston Children's Hospital Associate Professor of Anesthesia Harvard Medical School DATE Initial publication date: February 24, 2026. TRANSCRIPT https://cdn.bfldr.com/D6LGWP8S/at/84nhn6mvprnkpqjm3cq57pm8/202602_WSP_Tasker_Transcript.pdf Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children's Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open-access thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu CITATION Tasker RC, Riedl R, Rosengard K, Wolbrink TA. Navigating Scholarly Writing and Academic Productivity. 02/2026. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/navigating-scholarly-writing-and-academic-productivity-by-rtaskeretal.

As we wrap Season 18 of First Case, we turn the spotlight to the role that keeps everything moving behind the scenes: the Clinical Coordinator. In our final episode, Rod McArdle of Boston Children's Hospital shares how clinical coordinators balance scheduling, staffing, equipment, and real-time problem solving to keep surgical care running safely and efficiently. From anticipating equipment conflicts to coordinating with SPD, surgeons, and frontline teams, they are coordinating the moving pieces, communicating across teams, and thinking five steps ahead so the rest of us can focus on the patient in front of us. This episode brings our entire season full circle, highlighting the teamwork required across departments to make surgery happen every day.   #operatingroom #ornurse #nurse #scrubtech #surgery #clinicalcoordinator

Dr. Halley Alexander and Dr. Alissa M. D'Gama discuss genetic testing for infantile epilepsies.  Show citation:  Nguyen JNH, Lachgar-Ruiz M, Higginbotham EJ, et al. Diagnostic Yield of Comprehensive Reanalysis After Nondiagnostic Short-Read Genome Sequencing in Infants With Unexplained Epilepsy. Neurology. 2026;106(6):e214645. doi:10.1212/WNL.0000000000214645  Show transcript:  Dr. Halley Alexander:  Hi, this is Halley Alexander with today's Neurology Minute, and I'm here with Dr. Alissa D'Gama from Boston Children's Hospital and Harvard Medical School, and we just finished recording a full-length podcast about some exciting new work in genetic testing for infantile onset epilepsies. Alissa, can you tell us what you found briefly and why it's important for neurology care? Dr. Alissa D'Gama:  Infantile epilepsies are relatively common, and they're associated with substantial burden of disease, and we know that identifying underlying genetic causes can impact clinical care. It's important for emerging precision therapies. But even after genome sequencing, which is the most comprehensive clinical genetic testing currently available, most infants remain genetically unsolved. And so what we did was take that genome sequencing data and reanalyze it for a cohort of infants who had unexplained non-acquired epilepsy and non-diagnostic genome sequencing, and in about 5% of cases, our reanalysis was able to identify a genetic diagnosis, and all of these diagnoses had impact on clinical care for their infants and their families. In some cases, we could incorporate new information, either new clinical information about the patient or new scientific methods or information about disease associations, and in other cases, we were able to incorporate new analysis methods to identify variants. And so our findings suggest that implementing reanalysis for infants or any individual with epilepsy within a year or two of non-diagnostic testing may be useful. Dr. Halley Alexander:  Thank you so much, and you can find a lot more details by listening to the full-length podcast, which is available now on the Neurology podcast, and you can find the full article in the March 10th issue of Neurology or online at neurology.org. As always, thanks for tuning in for today's Neurology Minute. 

Shoulder and elbow injuries in pitchers are as old as baseball itself. Measures to lower the risk of these injuries have been evolving for decades, with a nationalized though heterogenous effort from state to state implemented in the mid-2010s. Adherence to pitch counts and mandatory days of rest in between outings, for example, are common restrictions placed upon pitchers to try and keep them safe. Dr. Peter Kriz, MD and his team from Boston Children's Hospital look back to see if these policies made any impact. Have the pitching restriction regulations designed to keep pitchers safe actually worked?

Episode 43 - Wendy Elverson - Managing Food Protein–Induced Allergic Proctocolitis (FPIAP)In this episode of Nutrition Pearls: the Podcast, co-hosts Megan Murphy and Bailey Koch speak with Wendy Elverson, RD, CSP, LDN about the latest research and best practice for managing infants with Food Protein-Induced Allergic Proctocolitis (FPIAP). Wendy is a registered dietitian who has specialized in clinical pediatric nutrition for more than 25 years. Currently, she is a Senior Clinical Nutrition Specialist at Boston Children's, with expertise in pediatric food allergies and feeding disorders. Wendy is a provider in several multidisciplinary, allergy-focused clinics, including the Atopic Dermatitis Center, the FPIES Clinic, and the EGID Clinic. Wendy has been an active member of CPNP since 2015 and has had many roles, currently serving on the NASPGHAN Public Education Committee. Wendy was the previous Chair of INDANA (International Network for Diet and Nutrition in Allergy) and is the current chair of the Nutrition Work Group of the Allied Health Assembly of the American Academy of Allergy, Asthma, and Immunology (AAAAI). She is a proud co-author of several publications, including a free resource for caregivers of children with milk and egg allergies, tolerant to baked milk and egg, Muffins and More: A Baked Milk and Baked Egg Recipe and Guidebook. Wendy was also the recipient of the 2025 CPNP Dietitian of Excellence Award. References: Mahoney, L. B., et al. (2025). Food protein-induced allergic proctocolitis: What do we know and where are we going? Current Treatment Options in Pediatrics, 11(1). https://doi.org/10.1007/s40746-025-00346-4Meyer, R., et al. (2025). An update on the diagnosis and management of non-IgE-mediated food allergies in children. Pediatric Allergy and Immunology, 36(3). https://doi.org/10.1111/pai.70060 Franco, C., Fente, C., Sánchez, C., Lamas, A., Cepeda, A., Leis, R., & Regal, P. (2022). Cow's Milk Antigens Content in Human Milk: A Scoping Review. In Foods (Vol. 11, Issue 12). https://doi.org/10.3390/foods11121783Gamirova, A., et al. (2022). Food proteins in human breast milk and probability of IgE-mediated allergic reaction during breastfeeding: A systematic review. Journal of Allergy and Clinical Immunology: In Practice, 10(5). https://doi.org/10.1016/j.jaip.2022.01.028Meyer, R., et al. (2023). WAO DRACMA guideline update VII: Milk elimination and reintroduction in cow's milk allergy diagnosis. World Allergy Organization Journal, 16(7). https://doi.org/10.1016/j.waojou.2023.100785Produced by: Corey IrwinNASPGHAN - Council for Pediatric Nutrition Professionalscpnp@naspghan.org

In this Complex Care Journal Club podcast episode, Drs. Kathleen Chiotos and Jeffrey Gerber discuss a post hoc time-series analysis of clinician feedback reports and antibiotic prescribing for community-acquired pneumonia in children with medical complexity (CMC). They describe why children with medical complexity are often excluded from guideline-based interventions, what the data suggest about antibiotic choice and duration in this population, and next steps to design studies that include all children. SPEAKERS Kathleen Chiotos, MD, MSCE Associate Professor of Anesthesiology and Critical Care University of Pennsylvania, Children's Hospital of Philadelphia Jeffery Gerber, MD, PhD Professor of Pediatrics and Epidemiology University of Pennsylvania School of Medicine; Children's Hospital of Philadelphia HOST Kristina Malik, MD Assistant Professor of Pediatrics, University of Colorado School of Medicine Medical Director, KidStreet Pediatrician, Special Care Clinic, Children's Hospital Colorado DATE Initial publication date: February 17, 2026. JOURNAL CLUB ARTICLE Chiotos K, Dutcher L, Grundmeier RW, Szymczak JE, Lautenbach E, Neuhauser MM, Hicks LA, Hamilton KW, Li Y, Muller BM, Meyahnwi D, Congdon M, Kane E, Hart J, Utidjian L, Cressman L, Jaskowiak-Barr A, Gerber JS. Off-target Impact of Clinician Feedback Reports on Antibiotic Use in Children With Medical Complexity Hospitalized With Community-Acquired Pneumonia. J Pediatric Infect Dis Soc. 2025 Oct 2;14(10):piaf089. doi: 10.1093/jpids/piaf089. PMID: 41051365. OTHER ARTICLES REFERENCED Chiotos K, Dutcher L, Grundmeier RW, Meyahnwi D, Lautenbach E, Neuhauser MM, Hicks LA, Hamilton KW, Li Y, Szymczak JE, Muller BM, Congdon M, Kane E, Hart J, Utidjian L, Cressman L, Jaskowiak-Barr A, Gerber JS. Impact of Clinician Feedback Reports on Antibiotic Use in Children Hospitalized With Community-acquired Pneumonia. Clin Infect Dis. 2025 Feb 24;80(2):263-270. doi: 10.1093/cid/ciae593. PMID: 39656188; PMCID: PMC12120840. Feudtner C, Feinstein JA, Zhong W, Hall M, Dai D. Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. BMC Pediatr. 2014 Aug 8;14:199. doi: 10.1186/1471-2431-14-199. PMID: 25102958; PMCID: PMC4134331. TRANSCRIPT https://cdn.bfldr.com/D6LGWP8S/as/bgxn4mqgk45zjxhxpxgxf3px/Chiotos_and_Gerber_podcast_2-13-26 Clinicians across healthcare professions, advocates, researchers, and patients/families are all encouraged to engage and provide feedback! You can recommend an article for discussion using this form: https://forms.gle/Bdxb86Sw5qq1uFhW6. Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children's Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open-access thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu CITATION Chiotos K, Gerber JS, Malik K. Evidence for Everyone: Studying Antibiotic Use for Pneumonia in Children With Medical Complexity. 2/2026. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/evidence-for-everyone-studying-antibiotic-use-for-pneumonia-in-children-with-medical-complexity.

Nessa live, eu conversei com o biomédico e pesquisador Dr. Andrew Koutnik (@andrewkoutnikphd)Dr. Andrew Koutnik é um cientista cuja carreira integra ciência de ponta, performance de elite e experiência pessoal vivendo com diabetes tipo 1 há mais de 17 anos. Doutor em Ciências Médicas (Farmacologia e Fisiologia Molecular) pela University of South Florida, ele desenvolveu pesquisas financiadas por instituições como NASA, Departamento de Defesa dos EUA e NIH, acumulando mais de 100 publicações e apresentações científicas internacionais. Seu trabalho investiga como nutrição, metabolismo e estilo de vida podem otimizar saúde, desempenho e resiliência — tanto em doenças crônicas quanto em contextos de alta exigência física.Atualmente professor no Institute for Sports Science and Medicine da Florida State University, Dr. Koutnik lidera estudos sobre fisiologia do exercício, saúde cardiometabólica e nutrição terapêutica, incluindo estratégias dietéticas para diabetes tipo 1 e 2, obesidade, sono e performance sob estresse metabólico. Colabora com instituições como Harvard Medical School e Boston Children's Hospital. Sua missão central é promover saúde metabólica baseada em evidência, ajudando indivíduos — inclusive atletas de elite — a alcançarem alto desempenho mesmo diante de desafios crônicos. Fora do laboratório, dedica-se à família e à prática de Brazilian Jiu Jitsu e treinamento físico.No Clube de Leitura, exploramos juntos obras que desafiam o senso comum — livros que unem ciência, filosofia e ancestralidade — sempre com uma visão crítica e prática para transformar o conhecimento em ação.

Former Nike exec Mark Hochgesang interviews Danny on Heavy Hitter Sports Podcast about MS & being an adaptive athlete. Just back from Belize! Training works. Summary My friend Mark Hochgesang, former Nike exec and host of Heavy Hitter Sports, recently interviewed me. While I usually wear my life on my sleeve on Health Hats, this conversation revealed something different—how I think about myself as an adaptive athlete. Phil Knight’s mantra: “If you have a body, you’re an athlete.” I never thought of it that way until Mark helped me see it. Training to travel? That’s athletic training. Loading a 60-pound wheelchair into an SUV? Strength work. Walking 3,500 steps a day with MS? Competition with myself. Here’s what we covered:

In this powerful and wide-ranging episode of The Injured List Podcast, we sit down with two inspiring guests who are using their voices and platforms to make a real impact—on and off the field.We're joined by Sherine Blackford, founder of Loving Loic, a platform dedicated to raising awareness and funding for PKAN, a rare and devastating neurodegenerative disorder. Sherine shares her deeply personal journey, the realities families face navigating rare disease, and how advocacy, community, and purpose can rise from unimaginable challenges.Learn more about the work she's doing — and how you can contribute to the Super Bowl Give-Off fundraiser supporting PKAN research

One of the first steps in creating your “digital twin” is already taking place at innovative medical centers across the U.S. Boston Children's Hospital and 20 other centers like it are using 3D cardiac models to improve pediatric heart surgery and help families better understand their child's care. The 3D visualization program creates patient-specific digital […] The post 3D Models to Guide Surgery: Not Science Fiction appeared first on Healthy Communities Online.

4 year old Ava Blazis woke up on the morning of March 11th 2023 with a very unusual pain in her abdomen which continued to get worse as the day wore on. Her mother Angela brought her to UMass Memorial Medical Center and 3 days later on March 14th, she was diagnosed with Acute Lymphoblastic Leukemia. Angela and Ava then spent the next 65 days at Boston Children's Hospital while Ava was undergoing treatment. Meanwhile Angela's sister Johanna Annuziata got busy with helping to look after Ava's brother Michael, and also helping to start Team Ava, an unofficial Non-Profit, which has already raised over $300,000 to help in the cause of Pediatric Cancer. Ava is now 7 years old and is doing well physically as she has been in remission since May of 2025. 

✨ New Episode: Healthy Living with Yoga Anita ✨This week, I'm joined by Damary Rosado — scientist, mom, poet, and author of Unraveling My Soul: “Silence the Mind and the Heart Will Sing.”Originally from Puerto Rico and now a longtime Fitchburg resident, Damary shares her powerful healing journey. After losing her mother at just 12 years old to a drug overdose, her aunt encouraged her to write as a way to process grief. That practice eventually became her book of poetry — a deeply honest expression of loss, faith, and hope.Shortly after publishing her book, Damary faced another unimaginable challenge when her daughter was diagnosed with Flu B, which progressed to sepsis, organ failure, dialysis, and a two-month coma at Boston Children's Hospital. Through daily prayer, unwavering faith, and the incredible medical team, her daughter made a miraculous recovery and returned to school at the Center for Applied Behavioral Instruction in Worcester this past December.Damary now shares her story to inspire others to lean into faith, creativity, and community during life's most difficult moments. A conversation filled with courage, love, and healing you won't want to miss.

This week we replay an important episode from 2 years ago in which we delved into the world of antibiotic prophylaxis for dental procedures. What are the data to support its use in the congenital heart patient? Why has this been such a difficult topic to study? What do we now know about this topic and what still remains unanswered? Given the low prevalence but dire consequences of this disease, how can investigators consider studying this topic in the future? Is there adequate equipoise to proceed with a randomized controlled trial? We speak with Advanced Imaging Fellow at Boston Children's Hospital, Dr. Francesca Sperotto of Harvard University about her recent multicenter meta-analysis of 30 studies including over one million cases of endocarditis. DOI: 10.1001/jamacardio.2024.0873

This Physician World Shared Practice Forum Podcast explores two multicenter studies on extubation outcomes in neonates and children following congenital cardiac surgery. These studies incorporate integration of machine learning and risk analytics for extubation decision-making, and examine extubation readiness and extubation failure outcomes. LEARNING OBJECTIVES - Understand the key factors influencing extubation outcomes following congenital cardiac surgery - Examine the use of machine learning and risk analytics in neonatal and pediatric extubation decisions - Discuss how machine learning can improve clinical decision-making and patient safety AUTHORS Daniel Hames, MD, MPH Assistant Professor of Pediatrics, Cardiac Care Unit Director of Quality and Safety University of Nebraska Medical Center Children's Nebraska Jeffrey Burns, MD, MPH Emeritus Chief Division of Critical Care Medicine Department of Anesthesiology, Critical Care and Pain Medicine Boston Children's Hospital Professor of Anesthesia Harvard Medical School DATE Initial publication date: January 27, 2026. ARTICLES REFERENCED - Hames DL, Abbas Q, Asfari A, Borasino S, Diddle JW, Gazit AZ, Lipsitz S, Marshall A, Reise K, Guerineau LR, Wolovits JS, Salvin JW. Extubation Failure in Neonates Following Congenital Cardiac Surgery: Multicenter Retrospective Cohort, 2017-2020. Pediatr Crit Care Med. 2025 May 1;26(5):e590-e599. doi: 10.1097/PCC.0000000000003703. Epub 2025 Feb 10. PMID: 39927824. - Hames DL, Abbas Q, Asfari A, et al. Clinical and Risk Analytics Associations With Extubation Failure in Children Following Congenital Cardiac Surgery: A Multicenter Retrospective Cohort Study, 2017-2020. Pediatr Crit Care Med. 2025;26(9):e1105-e1114. doi:10.1097/PCC.0000000000003793. TRANSCRIPT https://cdn.bfldr.com/D6LGWP8S/as/w7qqc97g6m9g5n5vrq5vkx6x/202601_WSP_Hames_Transcript. Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children's Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open-access thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu CITATION Hames DL, Burns JP. Integrating Risk Analytics in Post-Cardiac Surgery Extubation Readiness. 01/2026. OPENPediatrics. Online Podcast.

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Moyamoya Syndrome Stroke Recovery: Judy Kim Cage's Comeback From “Puff of Smoke” to Purpose At 4:00 AM, Judy Kim Cage woke up in pain so extreme that she was screaming, though she doesn't remember the scream. What she does remember is the “worst headache ever,” nausea, numbness, and then the terrifying truth: her left side was shutting down. Here's the part that makes her story hit even harder: Judy already lived with Moyamoya syndrome and had undergone brain surgeries years earlier. She genuinely believed she was “cured.” So when her stroke began, her brain fought the reality with everything it had. Denial, resistance, bargaining, and delay. And yet, Judy's story isn't about doom. It's about what Moyamoya syndrome stroke recovery can look like when you keep going, especially when recovery becomes less about “getting back to normal” and more about building a new, honest, meaningful life. What Is Moyamoya Syndrome (And Why It's Called “Puff of Smoke”) Moyamoya is a rare cerebrovascular disorder where the internal carotid arteries progressively narrow, reducing blood flow to the brain. The brain tries to compensate by creating fragile collateral vessels, thin-walled backups that can look like a “puff of smoke” on imaging. Those collateral vessels can become a risk. In Judy's case, the combination of her history, symptoms, and eventual deficits marked a devastating event that would reshape her life. The emotional gut punch wasn't only the stroke itself. It was the psychological whiplash of thinking you're safe… and discovering you're not. The First Enemy in Moyamoya Stroke Recovery: Denial Judy didn't just resist the hospital. She resisted the idea that this was happening at all. She'd been through countless ER visits in the past, having to explain Moyamoya to doctors, enduring tests, and then being told, “There's nothing we can do.” That history trained her to expect frustration and disappointment, not urgent help. So when her husband wanted to call emergency services, her reaction wasn't logical, it was emotional. It was the reflex of someone who'd been through too much. Denial isn't weakness. It's protection. It's your mind trying to buy time when the truth is too big to hold all at once. The Moment Reality Landed: “I Thought I Picked Up My Foot” In early recovery, Judy was convinced she could do what she used to do. Get up. Walk. Go to the bathroom. Handle it. But a powerful moment in rehab shifted everything: she was placed into an exoskeleton and realized her brain and body weren't speaking the same language. She believed she lifted her foot, then saw it hadn't moved for several seconds. That's when she finally had to admit what so many survivors eventually face: Recovery begins the moment you stop arguing with reality. Not because you “give up,” but because you stop wasting energy fighting what is and start investing energy into what can be. The Invisible Battle: Cognitive Fatigue and Energy Management If you're living through Moyamoya syndrome stroke recovery, it's easy for everyone (including you) to focus on the visible stuff: walking, arms, vision, and balance. But Judy's most persistent challenge wasn't always visible. It was cognitive fatigue, the kind that makes simple tasks feel impossible. Even something as ordinary as cleaning up an email inbox can become draining because it requires micro-decisions: categorize, prioritize, analyze, remember context, avoid mistakes. And then there's the emotional layer: when you're a perfectionist, errors feel personal. Judy described how fatigue increases mistakes, not because she doesn't care, but because the brain's bandwidth runs out. That's a brutal adjustment when your identity has always been built on competence. A practical shift that helped her Instead of trying to “finish” exhausting tasks in one heroic sprint, Judy learned to do small daily pieces. It's not glamorous, but it reduces cognitive load and protects energy. In other words: consistency beats intensity. Returning to Work After a Moyamoya Stroke: A Different Kind of Strength Judy's drive didn't disappear after her stroke. If anything, it became part of the recovery engine. She returned slowly, first restricted to a tiny number of hours. Even that was hard. But over time, she climbed back. She eventually returned full-time and later earned a promotion. That matters for one reason: it proves recovery doesn't have one shape. For some people, recovery is walking again. For others, it's parenting again. For others, it's working again without losing themselves to burnout. The goal isn't to recreate the old life perfectly. The goal is to build a life that fits who you are now. [Quote block mid-article] “If you couldn't make fun of it… it would be easier to fall into a pit of despair.” Humor Isn't Denial. It's a Tool. Judy doesn't pretend everything is okay. She's not selling toxic positivity. But she does use humor like a lever, something that lifts the emotional weight just enough to keep moving. She called her recovering left hand her “evil twin,” high-fived it when it improved, and looked for small “silver linings” not because the stroke was good, but because despair is dangerous. Laughter can't fix Moyamoya. But it can change what happens inside your nervous system: tension, stress response, mood, motivation, and your willingness to try again tomorrow. And sometimes, tomorrow is the whole win. Identity After Stroke: When “Big Stuff Became Small Stuff” One of the most profound shifts Judy described was this: the stroke changed her scale. Things that used to feel huge became small. Every day annoyances lost their power. It took something truly significant to rattle her. That's not magical thinking. That's a perspective earned the hard way. Many survivors quietly report this experience: once you've faced mortality and rebuilt your life from rubble, you stop wasting precious energy on what doesn't matter. Judy also found meaning in mentoring others because recovering alone can feel like walking through darkness without a map. Helping others doesn't erase what happened. But it can transform pain into purpose. If You're In Moyamoya Syndrome Stroke Recovery, Read This If your recovery feels messy… if you're exhausted by invisible symptoms… if the old “high achiever” version of you is fighting the new reality… You're not broken. You're adapting. And your next step doesn't have to be dramatic. It just has to be honest and repeatable: Simplify the day Protect energy Build routines Accept help Use humor when you can And find one person who understands Recovery is not a straight line. But it is possible to rebuild a life you actually want to live. If you want more support and guidance, you can also explore Bill's resources here: recoveryafterstroke.com/book patreon.com/recoveryafterstroke This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. Judy Kim Cage on Moyamoya Stroke Recovery, Cognitive Fatigue, and Finding Purpose Again She thought Moyamoya was “fixed.” Then a 4 AM headache proved otherwise. Judy's comeback will change how you see recovery. Judy’s Instagram Highlights: 00:00 Introduction and Guest Introduction 01:43 Life Before the Stroke 11:17 The Moment of the Stroke 19:56 Moyamoya Syndrome Stroke Recovery 25:36 Cognitive Fatigue and Executive Functioning 34:50 Rehabilitation Experience 42:29 Using Humor in Recovery 46:59 Finding Purpose After Stroke 54:19 Judy’s Book: Super Survivor 01:05:20 Conclusion and Final Thoughts Transcript: Introduction and Guest Introduction Bill Gasiamis (00:00) Hey there, I’m Bill Gasiamis and this is the Recovery After Stroke podcast. Before we jump in a quick thank you to my Patreon supporters. You help cover the hosting costs after more than 10 years of doing this independently. And you make it possible for me to keep creating episodes for stroke survivors who need hope and real guidance. And thank you to everyone who supports the show in the everyday ways too. The YouTube commenters, the people leaving reviews on Spotify and Apple. The folks who bought my book and everyone who sticks around and doesn’t skip the ads. I see you and I appreciate you. Now I want you to hear this. My guest today, Judy Kim Cage, woke up at 4am with the worst headache of her life and she was so deep in denial that she threatened to divorce her husband if he called 911. Judy lives with Moyamoya syndrome, a rare cerebrovascular condition often described as the puff of smoke on imaging. She’d already had brain surgeries and believed she was cured until the stroke changed everything. Judy also wrote a book called Super Survivor and it’s all about how denial, resistance and persistence can lead to success and a better life after stroke. I’ll put the links in the show notes. In this conversation, we talk about Moyamoya Syndrome, stroke recovery, the rehab moment where reality finally landed. and what it’s like to rebuild life with cognitive fatigue and executive functioning challenges and how Judy used humor and purpose to keep moving forward without pretending recovery is easy. Let’s get into it. Judy Kim Cage, welcome to the podcast. Life Before Moyamoya Syndrome Judy Kim Cage (01:43) Thank you so much, Bill Bill Gasiamis (01:45) Thanks for being here. Can you paint us a picture of your life before the stroke? What were your days like? Judy Kim Cage (01:51) Hmm. Well, my life before the stroke was me trying to be a high achiever and a corporate nerd. I think so. I think so. I, you know, I was in the Future Business Leaders of America in high school and then carried that forward to an accounting degree. Bill Gasiamis (02:04) Did you achieve it? Judy Kim Cage (02:20) and finance and then ⁓ had gone to work for Deloitte and the big four. ⁓ And after that moved into ⁓ internal audit for commercial mortgage and then risk and banking and it all rolled into compliance, which is a kind of larger chunk there. But ⁓ yeah, I was living the corporate dream and Traveling every other week, basically so 50 % of the time, flying to Columbus, staying there, and then flying back home for the weekend and working in a rented office for the week after. And I did that for all of 2018. And then in 2019 is when my body said, hang on a second. And I had a stroke. Bill Gasiamis (03:17) How many hours a week do you think you were working? Judy Kim Cage (03:19) Well, not including the treble, ⁓ probably 50-55. Bill Gasiamis (03:26) Okay. Judy Kim Cage (03:26) Oh, wish, that wasn’t that that really wasn’t a ton compared to my Deloitte days where I’d be working up to 90 hours a week. Bill Gasiamis (03:37) Wow. in that time when you’re working 90 hours a week. Is there time for anything else? you get to squeeze in a run at the gym or do you get to squeeze in a cafe catch up with a friend or anything like that? Judy Kim Cage (03:51) There are people that do. think, yeah, I mean, on certain particular weekends and my friends, a lot of my friends were also working with me. So there was time to socialize. And then, of course, we would all let off some steam, you know, at the pub, you know, at the end of a week. But ⁓ yeah, I remember on one of my very first jobs, I had been so excited because I had signed up to take guitar lessons and I was not able to leave in order to get there in time. ⁓ so that took a backseat. Bill Gasiamis (04:40) Yes, it sounds like there’s potentially lots of things that took a backseat. Yeah, work tends to be like that can be all consuming and when friendships especially are within the work group as well, even more so because everyone’s doing the same thing and it’s just go, Judy Kim Cage (04:44) Yeah, definitely. Absolutely. We started as a cohort essentially of, I want to say 40 some people all around the same age. And then, you know, as the years ticked by, we started falling off as they do in that industry. Bill Gasiamis (05:19) Do you enjoy it though? Like, is there a part of you that enjoys the whole craziness of all the travel, all the hours, the work stuff? it? Is it like interesting? Judy Kim Cage (05:31) Yeah, I do love it. I actually do love my job. I love compliance. I love working within a legal mindset with other lawyers. And basically knowing that I’m pretty good at my job, that I can be very well organized, that it would be difficult even for a normal healthy person and challenging and that I can do well there. And yeah, no, was, when I had put in a year, when I was in ⁓ acute therapy, ⁓ I had spoken with a number of students and they had interviewed me as a patient, but also from the psych side of it all, ⁓ asking, well, what does it feel like to all of a sudden have your life stop? And I said, well, ⁓ and things got a bit emotional, I said, I felt like I was at the top of my game. I had finally achieved the job that I absolutely wanted, had desired. ⁓ I felt like I’d found a home where I was now going to retire. And all of a sudden that seems like it was no longer a possibility. Bill Gasiamis (06:55) So that’s a very common thing that strokes have over say who I interviewed. They say stuff like I was at the top of my game and there’s this ⁓ idea or sense that once you get to the top of the game, you stay there. There’s no getting down from the top of the game and that it just keeps going and keeps going. And, I think it’s more about fit. sounds like it’s more about fit. Like I found a place where I fit. found a place where I’m okay. or I do well, where I succeed, where people believe in me, where I have the support and the faith or whatever it is of my employers, my team. Is that kind of how you describe on top of your game or is it something different? Judy Kim Cage (07:41) I think it was all of those things, ⁓ but also, you know, definitely the kindness of people, the support of people, their faith in my ability to be smart and get things done. But then also ⁓ just the fact that I finally said, okay, this was not necessarily a direct from undergrad to here. However, I was able to take pieces of everything that I had done and put it together into a position that was essentially kind of created for me and then launched from there. So I felt as though it was essentially having climbed all of those stairs. So I was at the top. Yeah. you know, looking at my Lion King kingdom and yeah. Bill Gasiamis (08:43) just about to ascend and, and it was short lived by the sound of it. Judy Kim Cage (08:49) It was, it was, it was only one year beforehand, but I am actually still at the company now. I ⁓ had gone and done ⁓ well. So I was in the hospital for a few months and following that. Well, following the round of inpatient and the one round of outpatient, said, okay, I’m going back. And I decided, I absolutely insisted that I was going to go back. The doctor said, okay, you can only work four hours a week. I said, four hours a week, what are you talking about? ⁓ But then I realized that four hours a week was actually really challenging at that time. ⁓ And then ⁓ I climbed back up. was, you know, I’m driven by deadlines and… ⁓ I was working, you know, leveraging long-term disability. And then once I had worked too many hours after five years, you know, I graduated from that program, or rather I got booted out of the program. ⁓ And then a year later, I was actually, well, no, actually at the end of the five years I was promoted. So, ⁓ after coming back full time. Bill Gasiamis (10:20) Wow. So this was all in 2019, the stroke. You were 39 years old. Do you remember, do you remember the moment when you realized there was something wrong? We’ll be back with more of Judy’s remarkable story in just a moment. If you’re listening right now and you’re in that stage where recovery feels invisible, where the fatigue is heavy, your brain feels slower. or you’re trying to explain a rare condition like Moyamoya and nobody really gets it. I want you to hear this clearly. You’re not failing. You’re recovering. If you want extra support between episodes, you can check out my book at recoveryafterstroke.com slash book. And if you’d like to help keep this podcast going and support my mission to reach a thousand episodes, you can support the podcast at Patreon by visiting patreon.com/recoveryafterstroke. All right, let’s get back to Judy. The Moment of the Stroke Judy Kim Cage (11:16) Yes, although I was in a lot of denial. ⁓ So we had just had dinner with ⁓ my stepdaughter and her husband ⁓ and ⁓ we were visiting them in Atlanta, Georgia. ⁓ And we said, OK, we’ll meet for brunch tomorrow. You know, great to see you. Have a good night. It was four in the morning and I was told I woke up screaming and I felt this horrible, horrible worst headache ever ⁓ on the right side. And I think because I have, I have Moyamoya syndrome, because of that and because I had had brain surgeries, ⁓ 10 years or back in December of 2008, I had a brain surgery on each side. And that at the time was the best of care that you could get. You know, that was essentially your cure. And so I thought I was cured. And so I thought I would never have a stroke. So when it was actually happening, I was in denial said there’s no way this could be happening. But the excess of pain, ⁓ the nausea and ⁓ it not going away after throwing up, the numbness ⁓ and then the eventual paralysis of my left side definitely ⁓ was evidence that something was very very wrong. Bill Gasiamis (13:09) So it was four in the morning, were you guys sleeping? Judy Kim Cage (13:14) ⁓ yeah, we were in bed. Yep. And yeah, I woke up screaming. According to my husband, I don’t remember the screaming part, but I remember all the pain. Bill Gasiamis (13:24) Yeah, did he ⁓ get you to hospital? Did he the emergency services? Judy Kim Cage (13:30) I apparently was kind of threatening to divorce him if he called 911. Bill Gasiamis (13:38) Wow, that’s a bit rough. Oh my lord. Judy Kim Cage (13:41) I know. mean, that could have been his out, but he didn’t. Bill Gasiamis (13:45) There’s worse things for a human to do than call 911 and get your support. Like marriages end for worse things than that. Judy Kim Cage (13:53) because I’ve been to the ER many, many, many times. And because of the Moyamoya, you would always, it being a rare disease, you would never be told, well, you would have to explain to all the doctors about what Moyamoya was, for one. For two, to say if I had a cold, for instance, that Moyamoya had nothing to do with it. Bill Gasiamis (14:11) Wow. Judy Kim Cage (14:19) But also, you know, they would give me an MRI, oof, the claustrophobia. I detested that. And I said, if you’re getting me into an MRI, please, please, please, a benzodiazepine would be incredible. Or just knock me out, whatever you need to do. But I’m not getting into that thing otherwise. But, you know, they would take the MRI, read it. and then say, hours and hours and hours later, there’s nothing we can do. The next course of action, if it was absolutely necessary, would be another surgery, which would have been bur holes that were drilled into my skull to relieve some sort of pressure. ⁓ In this particular case, the options were to ⁓ have a drain put in my skull. and then for me to be reliant on a ventilator. Or they said, you can have scans done every four hours and if the damage becomes too great, then we’ll move on. Otherwise, we’ll just keep tabs on it, essentially. Bill Gasiamis (15:37) Yeah. So I know that feeling because since my initial blade in February, 2012, I’ve lost count how many times I’ve been to the hospital for a scan that was unnecessary, but necessary at the time because you, you know, you tie yourself up in knots trying to work out, is this another one? Isn’t it another one? Is it, it, and then the only outcome that you can possibly come up with that puts your mind at ease and everybody else around you is let’s go and get a scan and then, and then move on with life. Once they tell you it was, ⁓ it was not another bleed or whatever. Yeah. However, three times I did go and three times there was a bleed. So it’s the whole, you know, how do you wrap your head around like which one isn’t the bleed, which one is the bleed and It’s a fricking nightmare if you ask me. And I seem to have now ⁓ transferred that concern to everybody else who has a headache. On the weekend, my son had a migraine. And I tell you what, because he was describing it as one of the worst headaches he had ever had, I just went into meltdown. I couldn’t cope. And it was like, go to the hospital, go to the hospital, go to… He didn’t go, he’s an adult, right? Makes his own decisions. But I was worried about it for days. And it wasn’t enough that even the next few days he was feeling better because I still have interviewed people who have had a headache for four or five or six days before they went to hospital and then they found that it was a stroke. it’s just become this crazy thing that I have to live with now. Judy Kim Cage (17:26) I essentially forced Rich to wait 12 hours before I called my vascular neurologist. And once I did, his office said, you need to go to the ER. And I said, okay, then that’s when I folded and said, all right, we’ll go. ⁓ And then, ⁓ you know, an ambulance came. Bill Gasiamis (17:35) Wow. Judy Kim Cage (17:53) took me out on a gurney and then took me to a mobile stroke unit, which there was only one of 11, there were only 11 in the country at the time. And they were able to scan me there and then had me basically interviewed by a neurologist via telecall. And this was, you know, before the days of teams and zoom and that we all tested out ⁓ from COVID. ⁓ yeah, that’s. Bill Gasiamis (18:35) That’s you, So then you get through that initial acute phase and then you wake up with a certain amount of deficits. Judy Kim Cage (18:37) Yeah. my gosh. ⁓ Well, yeah, absolutely. ⁓ Massive amounts of pain ⁓ from all the blood absorbing back into the brain. ⁓ The left side, my left side was paralyzed. My arm fell out of my shoulder socket. So it was hanging down loosely. ⁓ I had dropped foot, so I had to learn to walk again. Double vision and my facial group on the left and then. Bluff side neglect. Bill Gasiamis (19:31) Yeah. So, and then I see in our, in your notes, I see also you had diminished hearing, nerve pain, spasticity, cognitive fatigue, ⁓ bladder issues. You’d also triggered Ehlers-Danlos symptoms, whatever that is. Tell me about that. What’s that? Moyamoya Syndrome Stroke Recovery Judy Kim Cage (19:56) So I call myself a genetic mutant because the Moyamoya for one at the time I was diagnosed is discovered in 3.5 people out of a million. And then Ehlers-Danlos or EDS for short is also a genetic disorder. Well, certain versions are more genetic than others, but it is caused by a defect in your collagen, which makes up essentially your entire body. And so I have hypermobility, the blood, I have pots. So my, my blood basically remains down by my feet, it pulls at my feet. And so not enough of it gets up to my brain, which also could, you know, have affected the moimoya. But Essentially, it creates vestibular issues, these balance issues where it’s already bad enough that you have a stroke, but it’s another to be at the risk of falling all the time. Yeah. Or if you get up a little too fast, which I still do to this day, sometimes I’ll completely forget and I’ll just bounce up off the sofa to get myself a drink and I will sway and all of a sudden Bill Gasiamis (21:07) Yeah. Judy Kim Cage (21:22) onto the sofa or sit down right on the floor and say, okay, why did I not do the three-step plan to get up? ⁓ But sometimes it’s just too easy to forget. Bill Gasiamis (21:37) Yeah, yeah. You just act, you just move out of well habit or normal, normal ways that people move. And then you find yourself in a interesting situation. So I mean, how, how do you deal with all of that? Like you, you go from having experienced more and more by the way, let’s describe more and more a little bit, just so people know what it is. Judy Kim Cage (22:02) Absolutely. So, my way is a cerebrovascular disorder where your internal carotid progressively constricts. So for no known reason, no truly known reason. And so because it keeps shrinking and shrinking, not enough brain, blood gets to your brain. So what the brain decides to do to compensate is it will form these collateral vessels. And these collateral vessels, which there are many of them usually, you know, the longer this goes on, ⁓ they have very thin walls. So due to the combination of the thin walls, and if you have high blood pressure, these walls can break. And that is what happened in my case. ⁓ Well, the carotids will continue to occlude, but what happens is, ⁓ least with the surgery, they took my temporal artery, removed it from my scalp, had taken a plate off of my skull and stitched that. temporal artery onto my brain so that it would have a separate source of blood flow so that it was no longer reliant on this carotid. So we know that the carotid, sorry, that the temporal artery won’t fail out. ⁓ So usually, ⁓ and this was my surgery was actually done at Boston Children’s Hospital ⁓ by the man who pioneered the surgery. And he was basically head of neurosurgery at Harvard Medical School and Boston Children’s because they more often find this in children now. And the sooner they find it, the fewer collateral vessels will form once the surgery is performed. Bill Gasiamis (24:17) Okay, so the long-term risk is that it’s decreased, the risk of a blade decreases if they do the surgery early on too. I love that. Judy Kim Cage (24:25) The rest. But I was diagnosed at the age of 29. So I had quite a while of these collateral vessels forming in what they call a puff of smoke that appears on the MRI. ⁓ And that is what, you know, Moyamoya essentially means in Japanese, is translated to in Japanese, it’s puff of smoke. Bill Gasiamis (24:50) Wow, you have been going through this for a while then. So I can understand your whole mindset around doctors, another appointment, another MRI. Like I could totally, ⁓ it makes complete sense. You you’re over it after a certain amount of time. Yeah, I’m the same. I kind of get over it, but then I also have to take action because you know what we know what the previous Judy Kim Cage (25:07) Absolutely. Bill Gasiamis (25:19) outcome was and now you’re dealing with all of these deficits that you have to overcome. Which are the deficits that you’re still dealing with that are the most, well, the most sort of prolonged or challenging or whatever you want to call them, whatever. Cognitive Fatigue and Executive Functioning Judy Kim Cage (25:34) The most significant, I guess it’s the most wide ranging. But it is. ⁓ Energy management and cognitive fatigue. ⁓ I have issues with executive functioning. ⁓ Things are, you know, if I need to do sorting or filing. ⁓ That actually is. one of my least favorite things to do anymore. Whereas it was very easy at one point. ⁓ And now if I want to clean up my inbox, it is just a dreaded task. ⁓ And so now I’ve learned that if I do a little bit of it every day, then I don’t have, it doesn’t have to take nearly as long. ⁓ Bill Gasiamis (26:26) What it’s dreaded about it is it making decisions about where those emails belong, what to do to them or. Judy Kim Cage (26:33) Oh, no, it’s just the time and energy it takes to do it. It drains me very quickly. Because you have to evaluate and analyze every line as you’re deciding what project it belongs to. And there’s a strategic way to do it in terms of who you normally deal with on each project, etc. etc. This chunk of time, calendar dates you’ve worked on it, etc. But, know, That might by the time I get to this tedious task, I’m not thinking about it strategically. ⁓ Yeah, I’m just dragging each individual line item into a little folder. ⁓ So, ⁓ but yeah, like the cognitive deficits. gosh. mean, I’m working on a computer all day. I am definitely a corporate desk rat or mouse, you know, on the wheel. ⁓ And a lot of Excel spreadsheets and just a lot of very small print and sometimes I get to expand it. ⁓ And it really is just trying not to, well, the job involves making as few errors as you possibly can. Bill Gasiamis (28:01) Yeah. Judy Kim Cage (28:02) ⁓ Now when I get tired or overwhelmed or when I overdo it, which I frequently frequently do, ⁓ I find out that I’ve made more errors and I find out after the fact usually. So nothing that’s not reversible, nothing that’s not fixable, but it still is pretty disheartening for a perfectionist type such as myself. Bill Gasiamis (28:30) Wow. So the perfectionism also has to become something that you have to deal with even more so than before, because before you were probably capable of managing it now, you’re less capable. yeah, I understand. I’m not a perfectionist by all means. My wife can tend to be when she’s studying or something like that. And she suffers from, you know, spending Judy Kim Cage (28:46) the energy. Bill Gasiamis (29:00) potentially hours on three lines of a paragraph. Like she’s done that before and I’ll just, and I’ve gone into the room after three hours and her, and her going into the room was, I’m going to go in and do a few more lines because she was drained or tired or, you know, her brain wasn’t working properly or whatever. I’m just going to go do three more lines and three hours later, she’s still doing those three lines. It’s like, wow, you need to get out of the, you need to get out. need to, we need to. break this because it’s not, it’s not good. So I totally get what it’s liked to be like that. And then I have had the cognitive fatigue where emails were impossible. Spreadsheets forget about it. I never liked them anyway. And they were just absolutely forget about it. Um, I feel like they are just evil. I feel like the spreadsheets are evil, you know, all these things that you have to do in the background, forget about it. That’s unbelievable. So, um, What was it like when you first sort of woke up from the initial stroke, got out of your unconscious state and then realized you had to deal with all of this stuff? I know for some time you were probably unable to speak and were you ⁓ trapped inside your body? Is that right or? Judy Kim Cage (30:19) I was in the ICU. I was paralyzed on the left side, so I was not able to get up, not really able to move much. ⁓ I was not speaking too much, definitely not within the first week. I was in the ICU for 10 days. ⁓ And yeah, I just wasn’t able to do much other than scream from the beam. ⁓ And then I, once I became more aware, I insisted that I could get up and walk to the bathroom myself. I insisted that I could just sit up, get up, do all the things that I had done before. And it being a right side stroke as well, you know, I think helps contribute to the overestimation or the… just conceitedness, guess, and this self-confidence that I could just do anything. Yes, absolutely. And I was told time and time again, Judy, can’t walk, Judy, can’t go to the bathroom, Judy, you can’t do these things. And I was in absolute denial. And I would say, no, I can, I can get up. And meanwhile, I would say that Bill Gasiamis (31:30) Delusion Judy Kim Cage (31:51) husband was so afraid that I was going to physically try to get up and fall over, which would not have been good. ⁓ And so, you know, there was, there were some expletives involved. ⁓ And, ⁓ and then eventually once I was out of the ICU, ⁓ I didn’t truly accept that I couldn’t walk until Bill Gasiamis (32:00) but. Judy Kim Cage (32:20) one of the PT students had put me into an exoskeleton and I realized that my foot did not move at all, you know, like a full five seconds after I thought I picked it up. And I said, wait, hang on, what’s going on here? And I said, ⁓ okay, I guess I have to admit that I can’t walk. And then I can’t, I can’t sit upright. I can’t. You know, and like you had mentioned, you know, I had lost the signals from my brain to my bladder. They were slow or whatnot. And I was wetting the bed, like a child at a sleepover. And I was pretty horrified. And that happened for, you know, pretty much my, pretty much all my time at Kratie, except I got the timing down. ⁓ eventually, which was fantastic. But then when I moved to post-acute, ⁓ then I had to learn the timing all over again, just because, you know, of different, rules being different, the transfers being different, and then, ⁓ you know, just ⁓ the timing of when somebody would answer the call button, et cetera. Bill Gasiamis (33:45) Yeah. Do you, what was it like going to rehab? I was really excited about it. I was hanging out because I learned that I couldn’t walk when the nurse said to me, have you been to the toilet yet? And I said, no, I hadn’t been to the toilet. We’re talking hours after surgery, you know, maybe within the first eight or nine hours, something like that. And I went to put my left foot down onto the ground. She was going to help me. She was like a really petite Asian. framed lady and I’m and I’m probably two feet taller than her, something like that, and double her weight. And then she said, just put your hand on my shoulder and then I’ll support you. So I did that. I put my hand on her shoulder, stepped onto my left foot and then just collapsed straight onto the ground and realized, ⁓ no, I’m not walking. I can’t walk anymore. And then I was then waiting. hanging out to go to rehab was really excited about that. ⁓ What was it like for you? Moyamoya Syndrome Stroke Rehabilitation Experience Judy Kim Cage (34:48) Initially, well, do you so you mean. ⁓ Bill Gasiamis (34:56) Just as in like, were you aware that you could ⁓ improve things? Were you kind of like, we’re gonna overcome this type of stuff? Because you had a lot more things to overcome than I did. So it’s like, how is that? How do you frame that in your head? Were you the kind of person who was like, ⁓ rehab’s around the corner, let’s do that? Or were you kind of reluctant? Judy Kim Cage (35:19) It was a combination of two things. One, I had been dying to go home. I said, I absolutely, why can’t I go home? I was in the hospital for three weeks before we moved to the rehab hospital. And once we had done that, I was there basically for the entire weekend and then they do evaluations on Tuesday. And so I was told on Tuesday that I would be there for another at least four to six weeks. And so that was even before therapies really began. So there was a part of me saying, I don’t care, let me go home and I’ll do outpatient every day and everything will be fine. At least I get to go home. But then the other part. Bill Gasiamis (35:52) Thanks. Judy Kim Cage (36:11) said, okay, well, once I realized I was stuck and that I couldn’t escape, I couldn’t go anywhere, ⁓ I actually, I did love therapy. ⁓ I loved being in speech therapy, being in OTE, being in PT even, because my girls were fantastic. They were so caring, so understanding. They made jokes and also laughed at mine, which was even better. And when you’re not in therapy, especially on the weekends, you’re just in your room by yourself. And you’re not watching TV because that input is way too heavy. Listening to music. maybe a little bit here and there. ⁓ You know, all the things that you know and love are nowhere to be found, you know, really. ⁓ Yeah, absolutely. Yeah, yeah. And I get claustrophobic in the MRI, in the hospital, et cetera. yeah. Bill Gasiamis (37:14) Oscillating. Yeah. I was on YouTube, searching YouTube videos that were about neuroplasticity, retraining the brain, that kind of stuff, meditations, type of thing. That really helped me on those weekends. The family was always around, but there was delays between family visits and what have you that couldn’t be there that entire time. ⁓ So I found that very interesting. And you know, rehab was a combination of frustration and excitement, excitement that I was getting the help, frustration that things weren’t moving as quickly as I wanted. ⁓ And I even remember the occupational therapist making us make breakfast. And I wouldn’t recommend this breakfast for stroke survivors. I think it was cereal and toast or something like that. And I remember being frustrated, why are they making me make it? My left side doesn’t work. Like I can barely walk. I cannot carry the glass with the tea or anything like that to me. What are these people doing? They should be doing it for us. I wasn’t aware. I wasn’t aware that that was part of the therapy. I just thought they were making us make our own bloody breakfast. I thought these people are so terrible. And it took a while for me to clue on like, ⁓ okay. Judy Kim Cage (38:44) you Bill Gasiamis (38:52) They want me to be able to do this when I get home. ⁓ understood. Took a while. I’m thick like that. Judy Kim Cage (39:00) Fortunately, wasn’t made to cook until close to the end. And also during outpatient, I was tasked to make kind of a larger, you know, crock pot dinner so that, you know, I could do that at home. Meanwhile, the irony of it all is that. I can cook and I used to love cooking, but I don’t do it nearly as much as I used to. So that skill did not really transfer over. ⁓ I have Post-it notes up by the microwave that tell me right hand only because if I use my left hand, the temperature differential I will burn myself ⁓ without even realizing it or even reaching for a certain part of a pan that I think is going to be safe and is somewhat heat resistant. And I touch it and then poof, well, you know, get a burn. So there are post-it notes everywhere. There’s one by the front door that says, watch the steps, because I had a couple of times flown down them and gashed my knee. Bill Gasiamis (40:13) Yeah. Judy Kim Cage (40:26) And it’s amazing actually how long a Post-It note with its temporary stick will stay up on a wall. Bill Gasiamis (40:35) Well, there’s another opportunity for you there, like do a project, ⁓ a longevity of Post-it Notes project, see how long we can get out of one application. Judy Kim Cage (40:46) Yeah, well, this one actually, so I think it was three months after I had moved in, which would have been 10 months into my stroke recovery. And that’s when I fell down these steps. And that’s when I put up the Post-It note. it has been, a piece of tape has been added to it. but it only fell down, I think, a couple of years ago. Bill Gasiamis (41:18) Yeah. So 3M need to shift their entire focus. I feel like 3M. Yeah. I think 3M needs to have a permanent ⁓ post-it note application, but easy to remove. if I want to take it down, like it’s permanent once I put it up, but if I want to take it down, it’s still easy to remove and it doesn’t ruin my paint or leave residue. Judy Kim Cage (41:44) They do actually have that tech. have it for, they call it command. It’s what they have for the hooks for photos and whatnot. And then if you pull the tab and then release it, it will come off and leave the wall undamaged, but it will otherwise stay there for a long. Bill Gasiamis (42:04) Yes, yes, I think you’re right. Most of the time it works, yes. Okay, well, we’re moving on to other things. You’ve overcome a lot of stuff. You’re dealing with a lot of stuff. And yet, you have this disposition, which is very chirpy and happy, go lucky. Is it real, that disposition, or is it just a facade? Using Humor in Moyamoya Syndrome and Stroke Recovery Judy Kim Cage (42:29) No, no, it’s real. It’s real. ⁓ I think I’ve always ⁓ tried to make light of things. ⁓ Humors, probably my first defense mechanism. ⁓ And I think that helped out a lot ⁓ in terms of recovery. And also, ⁓ it put my therapist in a great mood. Also, because not many people did that apparently. You know, most people curse them off or, you know, were kind of miserable. And there were times when I was miserable too. Absolutely. But, but I probably took it out more on my husband than I did the staff. And he, and he would call, you know, I said, I was so mean to you, Rich. was so mean to you. And he said, yeah, you were nicer to the nurses than to me. And I. I apologized for it, but at the same time I’m like, yeah, but sometimes, bud, you are so annoying. Bill Gasiamis (43:33) You had it coming. Judy Kim Cage (43:34) Yeah. Why are you so overprotective? Why do you point out every crack in the sidewalk? Why do you know, you still say I have to stop to tie up my hair when we’re walking on the sidewalk, you know, because you’re not supposed to do two things at once. ⁓ Yeah. So I felt as though I would make jokes all the time. I when my left hand would start to regain function. I called it my evil twin because I didn’t even recognize that it was mine. But then I would give it a high five every time I started gaining function back. And I would say things like, yeah, hey, evil twin, congrats. Or ⁓ I would say, I guess I don’t have to clean the house anymore. I don’t have to use my left hand to dust. I’m not capable of doing it. So why do it? Bill Gasiamis (44:29) Yeah. Judy Kim Cage (44:30) And I’m like, let’s always look for the silver lining. And it would usually be a joke. But, you know, if you couldn’t make fun of it or think about the ridiculousness of it, then I think it would be easier to fall into a pit of despair. Bill Gasiamis (44:48) I agree with you and laughing and all that releases, know, good endo, good endorphins and good neurochemicals and all that kind of stuff really does improve your blood pressure. It improves the way that your body feels, you know, the tightness in your muscles and all that kind of stuff. Everything improves when you laugh and you have to find funny things about a bad situation to laugh at, to kind of dial down the seriousness of the situation. can you know, really dial it down just by picking something strange that happened and laughing at it. I found myself doing that as well. And I’m similar in that I would go to rehab and they would, you know, we would chit chat like I am now with you and would have all sorts of conversations about all kinds of things. And the rehab was kind of like the, the, it was like the vessel, you know, to talk shit, have a laugh. ⁓ you know, be the clown of the rehab room. And I get it, everyone’s doing it tough, but it lightened the mood for everybody. You know, was, it’s a hard thing. You know, imagine it being just constantly and forever hard. And it was like, I don’t want to be that guy and wish they have fun as well. And, and I think my, my, my tough times were decreased as a result. Like, you know, those stuff, mental and emotional days, they, they come, but they go. then you have relief from them. And I think you need relief. Judy Kim Cage (46:23) Absolutely. Otherwise, just could feel perpetual and just never ending. ⁓ And why or how could you possibly survive feeling that way? Bill Gasiamis (46:39) Yeah. So who are you now? as in your, how does your idea of who you are sort of begin to shift after the initial acute phase and now six years in, almost seven years into your stroke journey? Finding Purpose After Stroke Judy Kim Cage (46:59) I think I am. I’m pretty confident in who I am, which is funny. ⁓ I ⁓ actually lean more into making more jokes or ⁓ lean into the fact that things don’t, they don’t have nearly the importance or the impact that you would otherwise think. ⁓ One of my sayings, I guess I say all the, you know, how they say don’t sweat the small stuff. my big stuff, like big stuff became small stuff, you know. So it would have to be something pretty big in order for me to really, really, you know, think about it. And a lot of the little things, you know, the nuisances in life and stuff, would usually just laugh or if I tripped or something, then I would just laugh at it and just keep moving on. ⁓ And I think, you know, It’s funny because some people will say, ⁓ gosh, like stop, you know, there is toxic positivity, right? And there’s plenty of that. And ⁓ I stay away from that, I think. But when I try to give people advice or a different outlook, ⁓ I do say, well, you you could think of it this way, you know. It’s not all sunshine and rainbows and flowers and, you know, care bears, but it is, you know, but it, but you can pull yourself out of a situation. You can try to figure out a way to work around it. You can, you know, choose differently for yourself, you know, do things that you love. You know, you’re only given a certain amount of limited time on the earth. So how do you want to spend it? And if you are on your deathbed, you know, would you have, do you have any regrets? You know, like you did read the books about, you know, that, ⁓ why am I forgetting? Doctors ⁓ that perform palliative care and, you know, they’ve written books about you know what people’s regrets have been after, know, once they are about to pass and you know, that not taking action was a regret. You know, like why didn’t I do this? Or why didn’t I do this? Why didn’t I try this? Like really, what would have been the downfall to trying something? ⁓ And I find that, you know, aside from just naturally being able to see things to laugh at or, or positive sides of things. ⁓ I tried, like, I wish that people could experience that without having gone through what we went through. ⁓ but that’s virtually impossible. I think. Bill Gasiamis (50:18) I think it’s impossible, totally, 100 % impossible because everybody thinks they’re doing okay until they’re not. You just cannot prevent somebody from going through something by taking the learning first. The learning has to come second. Sad as that is. Judy Kim Cage (50:39) ⁓ Well, and we all think we’re invincible to a large extent. ⁓ But ⁓ I think what I’ve been trying to do or me now, I’ve always, you know, volunteered in various ways, but now I take and hold extra value in being a mentor for other stroke patients. Bill Gasiamis (51:03) Yeah, yeah, that’s Judy Kim Cage (51:04) And for, you know, individuals that even just come up to me and talk about all of their medical problems, it doesn’t matter if it’s circulated or not, you know, it’s medically they’re like, there’s some white matter on my MRI, what do think I should do? I’m like, it’s not that simple of an answer. I think you should go to the doctor. Get on a list. Bill Gasiamis (51:29) Yeah. Your journey seems like you’re growing through this adversity, like as in it’s very post-traumatic growth type of experience here. Something that I talk about on my book, the unexpected way that a stroke became the best thing that happened. Not something that I recommend people experience to get to the other side of that, of course. But in hindsight, like it’s all those things that you’re describing. Judy’s Book: Super Survivor And I look at the chapters because in fact, you’ve written a book and it’s going to be out after this episode goes live, which is awesome. And the book that you’ve written is called Super Survivor. And indeed that is a fitting title. Indeed it is. How denial, resistance and persistence can lead to success and a better life after stroke. Right? So just looking at some of the chapters, there’s a lot of overlap there, right? And one of the chapters that there’s overlap in is the volunteering and purpose. I’ve got parts of my book that specifically talk about doing stuff for other people and how that supports recovery and how the people who said that stroke was the best thing that happened to them, the ones that I interviewed to gather the data, one of the main things that they were doing was helping other people, volunteering in some way, shape or form. And that helped shape their purpose in life. and their meaning in life. And it’s how I got there as well. It was like, okay, I’m gonna go and prevent stroke. I’m gonna go talk on behalf of the Stroke Foundation. We’re gonna raise awareness about what stroke is, how to take action on stroke, what to do if somebody’s having a stroke. And I started to feel like I gained a purpose in my life, which was gonna to not allow other people to go through what I went through. And then, With that came public speaking and then with that came the podcast and then the purpose grew and it became really ⁓ all encompassing. It’s like, wow, like I know what my mission is. I didn’t seek to find it. I stumbled across it and the chapter in my book is called stumbling into purpose because you can’t think it up. You just have to take action and then bam, bam, it appears. Like, is that your experience? Judy Kim Cage (53:53) ⁓ Well, so much of my identity had been wrapped up in my occupation. ⁓ And so when, you know, the stroke first happened, et cetera, but then as time has passed, ⁓ yeah, I’ve absolutely found more meaning in providing comfort to other stroke patients. whether it’s because they see me as inspiring that I was able to recover so quickly or that I was able to go back to work, you know, permanently. And just to give them hope, really. And ⁓ when I was in acute, I felt as though like, We do so much of the recovery alone ⁓ and there isn’t a ton of, you know, of course our therapists are fantastic and they’re, you know, they’re loving and they’re caring. But in terms of having to make it through, you know, certain darkness alone or, ⁓ you know, just feeling sorry for yourself even sometimes, or feeling like, hey, I can do everything, but nobody’s encouraging that. because they think it’s dangerous. ⁓ I had wished that, you know, there were more people who could understand ⁓ what survival and then recovery was, you know, truly like. And so I had read that in a number of books before hearing people tell me their stories in person because Emotionally, I absorbed too much of it. ⁓ I wanted to, I think I passed that five-year survival mark of the 26.7%, which I know varies for everybody. ⁓ at the same time, I said, wow, I did, I made it to the other side, I beat these odds. I think I wanted to keep it secret from all the people I worked with. which I still have actually, it won’t be for too much longer. ⁓ But ⁓ just being able to share that and to be vulnerable and to say all the deficits that I have and what I have overcome, ⁓ I think it’s also given people some hope that they can, if she was able to do it, then maybe it isn’t as tough as I think it is. Bill Gasiamis (56:43) Anyone can. Yeah, I love that. That’s kind of my approach to, you know, I’m just a average, humble, normal, amazing guy. You could do it too. You know, I could, I could teach you to what you need to do is learn. ⁓ but that’s true. It’s that it’s that we are, I get, I get people come on the podcast going, I’m so nervous to meet you. You’re on the, I’m on your podcast. Dude, you don’t know who I am. Like if you think I’m the podcast guy, you’ve got no idea. I’m in the back of my, in my garden, in a shed. what was something that’s meant to be a shed that looks like a studio and amazing and all this kind of stuff. Like, dude, I’m just. Judy Kim Cage (57:29) would not have known if you hadn’t told me. Bill Gasiamis (57:32) That’s right, because looks can be deceiving and that ideas that we get of people are just, you know, they’re just not accurate until we get to spend time with people and understand them. And I always try and play down who I am so that people can see that I am just a regular guy who went through this and had no, no equipment. had no ⁓ knowledge. had no skills overcoming learning. Like I just, I picked up what I needed when I could just so that I can stumble through to the next hurdle and stumble through that one and then keep going. I really want people to understand that even the people who appear to be super fabulous at everything, like they’re just not, nobody is that, everyone is just doing their best they can. Even the guy who’s got more money than you, a bigger house, whatever, a better investment, all that stuff, they’re all faking it until shit hits the fan and then they’ve got to really step up to be who they are. You know, that’s what I find. But attitude, mindset, ⁓ approach, know, laughing, doing things for other people all help. They are really important steps, you know. The other chapter that kind of. made me pay attention and take note ⁓ was you talk about the night everything changed, complicated medical history, lifesavers, volunteering and purpose, the caregivers, ⁓ easing back into life, which I think is a really important chapter, returning to work, which is really important. then chapter nine, life after stroke continued. That kind of really is something that made me pay attention because that’s exactly what it is, right? It’s life after stroke. It’s like a continuation. It’s a never ending kind of ⁓ unattainable thing. Judy Kim Cage (59:27) It just keeps rolling on. doesn’t stop. You know, even if you’ve gone through a hardship and overcome it, it doesn’t mean that life stops. You’ve got to keep learning these lessons over and over and over again. Even if you don’t want to learn them, however stubborn you are. ⁓ And I, you know, I one thing that I had written about was that I had resented ⁓ you know, what I had gone through for a little while. I said, why do I still have to learn the same lessons that everybody else has to learn? You know, if I’ve gone through this kind of transcendental thing, why do I still have to learn, you know, these other things? But then I realized that I was given the opportunity ⁓ from surviving, was given another chance to be able to truly realize what it was like to be happy and to live. And I’d never, I mean, I had, I had been depressed, you know, for an anxious for years. And, you know, I’ve been in therapy for years and, ⁓ you know, it really wasn’t truly until kind of getting this push of the fast forward button on learning lessons that it truly became happy, like true, true happiness. And I said, wow, that was the gift. And then to try to pass that on. Bill Gasiamis (1:01:10) It’s a pretty cool life hack. A shit way to experience it, but a pretty cool life hack. Judy Kim Cage (1:01:15) Yeah, yeah, yeah, definitely don’t I don’t recommend it I don’t Bill Gasiamis (1:01:20) Yeah. You get the learning in a short amount of time instead of years of years of wisdom and developing and learning and overcoming, which you avoided up until your first, you know, 38 years. And then, you know, you then, and then you kind of all of a sudden go, okay, well, I really have to buckle down and do these, ⁓ these modules of learning and I’ve got no choice. And I was the same. ⁓ and I have my days, I have my Good days, bad days, and I even recently had a bit of a day where I said to my wife, I got diagnosed with high blood pressure, headaches, migraines, a whole bunch of stuff, and then just tomorrow, I’m I’ve had enough. Why do I need to to be diagnosed with more things? Why do I need to have more medical appointments? Enough, it’s enough. I need to stop this stuff. It’s not fun. And then it took me about half a day to get over myself and go, well, I shouldn’t be here, really. Technically, Somebody has three blades in the brain, you know, I don’t know, maybe 50 years ago, they weren’t gonna make it. So now you’ve made it also high blood pressure. If you had high blood pressure 50 years ago, there was nothing to do to treat it. It was just gonna be high until you had a heart attack or ⁓ a brain aneurysm burst or something. And it’s like, I get to live in a time when interventions are possible and it is a blip on the radar. Like just all you do is take this tablet and you’re fine. Not that I revert to give me the tablet solution. I don’t, I’m forever going under the underlying cause. I want to know what the underlying cause is trying to get to the bottom of all of that. But in the meantime, I can remain stable with this little tablet and ⁓ decrease the risk of another brain hemorrhage. So it’s cool, know, like whatever. And that kind of helps me get through the, why me days, you know, cause They’re there, they come, they turn up, especially if it’s been one day after the next where things have been really unwell and we’ve had to medical help or whatever. When it’s been kind of intense version of it, it’s like, okay, I don’t want any more of this. So I get the whole, I’ve experienced the whole spectrum in this last 13, 14 years. We’re coming up to, I think the 20th or 21st, I think is my, maybe the 25th of my anniversary of my brain surgery. Jeez, I’ve come a long way. It’s okay. It’ll be like 11 years since my brain surgery. A lot of good things have happened since then. We got to live life for another 13 years, 11 years. I keep forgetting the number, it doesn’t matter. Yeah. Judy Kim Cage (1:04:17) Mine will have been my 17th ⁓ anniversary of my brain surgery ⁓ will be in January, sorry, in December. And then the seventh anniversary of the stroke is in January. So lot of years. Bill Gasiamis (1:04:33) Yeah, yeah. A lot of years, a lot of years, great that they’ve happened and I’m really happy with that. Keep doing these podcasts, makes me forget about myself. It’s about other people, so that’s cool. know, meet people like you, putting out awesome books. And when I was going through early on, there wasn’t a lot of content. It was hard to get content on stroke surviving, recovery, all the deficits, all the problems. That’s part of the reason why I started this. And now I think I’ve interviewed maybe 20 or 30 people who have written a book about stroke, which means that the access to information and stories is huge, right? So much of it. ⁓ Your book comes out in early December. Where is it going to be available for people to buy? Conclusion and Final Thoughts Judy Kim Cage (1:05:20) It is currently available to download ⁓ through the Kindle app and through Amazon. The hard copies will be available to order through Amazon and hopefully in other booksellers, but that’s TBD. Bill Gasiamis (1:05:39) Yeah, well, we’ll have all the current links by then. We’ll have all the current links available in the show notes. ⁓ At the beginning of this episode, I would have already talked about the book and in your bio when I’m describing the episode and who I’m about to chat to. So people would have already heard that once and hopefully they’ll be hearing it again at the end of the episode. So guys, if you didn’t pay attention at the beginning, but now you’re at the end, it’s about to come. I’m going to give all the details. Judy Kim Cage (1:06:07) stuck around. Bill Gasiamis (1:06:09) Yeah. If you stuck around, give us a thumbs up, right? Stuck around in the comments or something, you know? ⁓ Absolutely. Thank you so much for joining me, reaching out, sharing your story. It is lovely to hear and I wish you well in all of your endeavors, your continued recovery. yeah, fantastic. Great stuff. Thank you so much. Thank you. Well, that’s a wrap for another episode. want to thank Judy for sharing her story so openly. The way she spoke about denial, rehab, reality, cognitive fatigue and rebuilding identity is going to help a lot of people feel less alone. If you’re watching on YouTube, let us know in the comments, what part of Moyamoya Syndrome stroke recovery has been the hardest to explain to other people for you? Was it the physical symptoms or is it the invisible ones? like fatigue and cognition. And if you’re listening on Spotify or Apple podcasts, please leave a review. It really helps other stroke survivors find these conversations when they need them most. Judy’s book is called Super Survivor, How Denial Resistance and Persistence can lead to success and a better life after stroke. And you’ll find the links in the show notes. And if you want more support from me, you can Grab a copy of my book at recoveryafterstroke.com/book, and you can become a Patreon supporter at patreon.com/recoveryafterstroke. It genuinely helps keep this show alive. Thanks again for being here. Remember you’re not alone in this recovery journey and I’ll see you in the next episode. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However, third party links from our website are followed at your own risk and we are not responsible for any information you find there. The post Moyamoya Syndrome Stroke Recovery: How Judy Rebuilt Her Life After a “Puff of Smoke” Diagnosis appeared first on Recovery After Stroke.

Today, Jaansi sits down with Dr. Michael Rich, also known as the Mediatrician, to explore how digital media and technology shape adolescent identity and connection. Together, they discuss why screens themselves aren't the problem, how digital tools can amplify both harm and healing, and what it means to approach youth mental health through interdisciplinary, compassionate, and equity-centered lenses in a rapidly evolving digital world.​Dr. Michael Rich is a pediatrician and child health researcher at Boston Children's Hospital and a professor at Harvard Medical School. He is the founder and director of the Digital Wellness Lab and the Clinic for Interactive Media and Internet Disorders. Widely recognized for bridging medicine, psychology, and media studies, Dr. Rich is a leading voice on understanding and improving how children and adolescents engage with digital media.Check out Dr. Rich's work:The Mediatrician's Guide: www.harpercollinsfocus.com/9780785255727/the-mediatricians-guide/The Digital Wellness Lab: digitalwellnesslab.org/Stay updated with DWL: www.linkedin.com/company/digital-wellness-lab/posts/?feedView=allThe Inspired Internet Pledge: inspiredinternet.org/

In this Complex Care Journal Club podcast episode, Drs. Reshma Amin and Christopher Baker discuss a clinical practice guideline from the American Thoracic Society on the care of infants and children with tracheostomies. They describe the role of interprofessional and family-centered decision-making, safety- and ethics-driven recommendations, and next steps for implementation across diverse healthcare settings. SPEAKERS Reshma Amin, MD, MSc Staff Respirologist, Director of Sleep Medicine and Long-term Ventilation The Hospital for Sick Children Senior Associate Scientist, SickKids Research Institute Professor, The University of Toronto Christopher D. Baker, MD Director, Ventilation Care Program, Children's Hospital Colorado Professor of Pediatrics - Pulmonary Medicine University of Colorado School of Medicine HOST Kilby Mann, MD Associate ‌Professor Pediatric Rehabilitation Medicine Children's Hospital Colorado DATE Initial publication date: January 13, 2026. JOURNAL CLUB ARTICLE Amin R, Agarwal A, Chiang J, Collaco JM, Cristea AI, Propst EJ, Sobotka SA, Balakrishnan K, Benscoter D, Brenner MJ, Castro-Codesal ML, Cuevas Guaman M, Daines CL, Dawson JA, Edwards JD, Graham RJ, Henningfeld JK, Hoekstra NE, Jackson AJ, Johnson RF, Kam K, Kun SS, Napolitano N, Pacheco A, Panitch HB, Prager JD, Shi JY, Soma M, St-Laurent A, Syed F, Watters KF, Zielinski D, Ho ATN, Velagapudi RK, Zeba F, Knight SL, Iyer N, Baker CD. Care of Infants and Children with Tracheostomies: An Official American Thoracic Society Clinical Practice Guideline. Am J Respir Crit Care Med. 2025 Nov;211(11):2001-2020. doi: 10.1164/rccm.202508-2055ST. PMID: 41123183; PMCID: PMC12618984. OTHER ARTICLES REFERENCED Sherman JM, Davis S, Albamonte-Petrick S, Chatburn RL, Fitton C, Green C, Johnston J, Lyrene RK, Myer C 3rd, Othersen HB, Wood R, Zach M, Zander J, Zinman R. Care of the child with a chronic tracheostomy. This official statement of the American Thoracic Society was adopted by the ATS Board of Directors, July 1999. Am J Respir Crit Care Med. 2000 Jan;161(1):297-308. doi: 10.1164/ajrccm.161.1.ats1-00. PMID: 10619835. ‌ Sterni LM, Collaco JM, Baker CD, Carroll JL, Sharma GD, Brozek JL, Finder JD, Ackerman VL, Arens R, Boroughs DS, Carter J, Daigle KL, Dougherty J, Gozal D, Kevill K, Kravitz RM, Kriseman T, MacLusky I, Rivera-Spoljaric K, Tori AJ, Ferkol T, Halbower AC; ATS Pediatric Chronic Home Ventilation Workgroup. An Official American Thoracic Society Clinical Practice Guideline: Pediatric Chronic Home Invasive Ventilation. Am J Respir Crit Care Med. 2016 Apr 15;193(8):e16-35. doi: 10.1164/rccm.201602-0276ST. PMID: 27082538; PMCID: PMC5439679. ‌ TRANSCRIPT https://cdn.bfldr.com/D6LGWP8S/as/wkhzg7pznk5cgb23sk9xg7w7/Amin_and_Baker_Final_transcript_1-9-26_kh_ra_Baker Clinicians across healthcare professions, advocates, researchers, and patients/families are all encouraged to engage and provide feedback! You can recommend an article for discussion using this form: https://forms.gle/Bdxb86Sw5qq1uFhW6. Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children's Hospital. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open-access. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu CITATION Amin R, Baker CD, Mann K. Balancing Safety, Practicality, and Equity in Pediatric Tracheostomy Guidelines. 1/2026. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/balancing-safety-practicality-and-equity-in-pediatric-tracheostomy-guidelines.

About our Guests: Dr. Alexis Bragg is a Clinical Associate Professor of Anesthesiology and Pediatrics at Keck School of Medicine of USC in Los Angeles.Dr. Chinyere Egbuta is a Senior Associate in Anesthesiology and Critical Care Medicine at Boston Children's Hospital and Assistant Professor of Anesthesia at Harvard Medical School.Dr. Sapna Kudchadkar is the Anesthesiologist-in-Chief of the Johns Hopkins Children's Center and Vice Chair for Pediatric Anesthesiology and Critical Care Medicine at Johns Hopkins University School of Medicine in Baltimore.Learning Objective:By the end of this podcast series, listeners should be able to discuss:An expert approach to the peri-intubation management of the critically-ill child, including pre-oxygenation, apneic oxygenation +/- PPV, & the use of neuromuscular blockadeStrategies using direct vs. video laryngoscopy in academic PICUsRecognize the need and discuss potential strategies for ongoing maintenance of airway management skillsQuestions, comments or feedback? Please send us a message at this link (leave email address if you would like us to relpy) Thanks! -Alice & ZacSupport the showHow to support PedsCrit:Please complete our Listener Feedback SurveyPlease rate and review on Spotify and Apple Podcasts!Donations are appreciated @PedsCrit on Venmo , you can also support us by becoming a patron on Patreon. 100% of funds go to supporting the show. Please remember that all content during this episode is intended for educational and entertainment purposes only. It should not be used as medical advice. The views expressed during this episode by hosts and our guests are their own and do not reflect the official position of their institutions. If you have any comments, suggestions, or feedback-you can email us at pedscritpodcast@gmail.com. You can also check out our website at http://www.pedscrit.com. Thank you for listening to this episode of PedsCrit!

Welcome back to Architecture 5 10 20! I'm your host, Guy Geier, Managing Partner of FXCollaborative Architects in New York. My guests for this podcast are pioneers and visionaries shaping the future of the built environment across various disciplines. Join me in exploring their remarkable journeys, discovering how they reach their current heights, and envisioning what lies ahead in the next 5, 10, and 20 years. For this finale episode, I am joined by Carole Wedge of The American Institute of Architects (AIA). Carole and I trace her 40-year career from a nontraditional start at Shepley Bulfinch, through Wall Street detours, to leading one of the country's oldest architecture firms! She reflects on how those experiences shaped her approach to mentorship, inclusion, and professional growth, and she shares how saying "yes" to opportunities that she didn't fully understand introduced her to national networks, long-term collaborations, and initiatives such as the Women's Leadership Summit! We explore Carole's priorities as CEO, including but not limited to how the organization can better support architects via practical business training, and technology integration. Carole highlights the importance of architects having the tools to help communities prepare for and recover from disasters such as Hurricane Sandy while also ensuring that the next generation is engaged, supported, and inspired to lead. We touch upon challenges facing the profession, from post-pandemic workplace changes to attracting young talent, including underrepresented voices, and the need to address long-standing issues such as compensation and access to education. Our discussion also takes a global perspective, with Carole highlighting examples of innovative approaches to design around the world and stressing the value of collaboration across firms, communities, and government. She also talks about how architects can step into roles that make a real difference in shaping cities and public spaces, and, along the way, she shares her reflections on giving back to a profession that has given her so much. If you're curious about where architecture is headed, the responsibilities of professional leadership, and the strategies needed to make a real impact on both the profession and the communities it serves, this episode is for you. Thank you for tuning in to the final episode! Time stamps: [2:37] - Hear how Carole shifted from biology to architecture, combining climate awareness, sustainability, and creativity. [5:24] - Economic downturns led Carole to Wall Street, teaching her business skills which architects rarely learn. [8:12] - Beginning nontraditionally, Carole embraced mentorship and helped change her firm into a national practice. [10:29] - Carole discusses how Shepley Bulfinch evolved via resilience, relationships, and adaptability. [13:03] - Carole highlights her work on landmark hospitals, including Boston Children's. [14:03] - Carole credits saying yes to opportunities for building leadership networks and driving meaningful initiatives. [17:11] - Hear how, retiring from Shepley, Carole embraced AIA leadership to use her experience for broader impact. [19:25] - Carole highlights supporting architects via technology, business skills, and climate-resilient community rebuilding.[22:38] - Carole advocates for proactive design and mentoring young architects to strengthen the profession. [25:29] - Since COVID, younger professionals are missing out on the informal learning and mentorship that used to happen naturally in the office. [26:09] - Carole regards hybrid models as opportunities, stressing listening to members and supporting local AIA efforts.[28:42] - Carole stresses that AI complements, not replaces, architects, and she highlights attracting the next generation. [29:54] - Carole advocates for teaching business, technology, and career skills to architects. [32:55] - Carole highlights NOMA and Project Pipeline's role in K–12 design education and hands-on career exposure. [34:47] - Carole stresses the need to reform compensation and support architects amid rising education costs. [36:52] - Fair profit-sharing and transparency about salary help address student debt challenges. [37:55] - Hear how AIA's Washington presence enables advocacy. [40:26] Carole highlights aligning architects with communities and students to address climate, housing, and technology issues. [43:38] Carole encourages optimism, continuous improvement, and saying yes to opportunities while giving back to the profession. Links / Resources: Guy Geier Instagram | Twitter Carole Wedge Carole's LinkedIn | AIA Website | AIA LinkedIn

Happy New Year listeners! We hope you enjoyed the holidays and are off to a wonderful start of 2026!    The last episode we released featured our Executive Producer Kira Dineen putting on her genetic counseling hat to explore how genetic counselors can help those in the rare disease community. With how much you all enjoyed that “blast from the past” episode, we thought we would bring you one more before our new episodes of 2026 kick off.  So we are continuing on the topic of rare diseases genetics, and revisiting our episode with Amy Patterson, who is a genetic counselor as well. In this conversation she shares with Cathy and Beth about genetic screening and testing available for rare diseases including her speciality of skeletal dysplasia.   Genetic Counselor Amy Patterson shares about genetic screening and testing available for rare disease including her speciality of skeletal dysplasias.    Amy Patterson (she/her) is a licensed pediatric and adult genetic counselor in the Johns Hopkins Department of Genetic Medicine. She primarily works with patients in the Greenberg Center for Skeletal Dysplasias as well as the General Genetics clinic. Especially in the skeletal dysplasia space, Amy works to promote a holistic patient experience, including psychosocial counseling, connection with patient advocacy groups, informed consent, genetic testing and interpretation of results, coordination of care, and discussion of research options. Amy was a LEND Fellow and graduated from the Boston University Genetic Counseling program in 2021. She has focused much of her research and clinical work on the intersection of rare conditions, disability, and patient advocacy.   Amy initially started advocating in the rare disease space due to her best friend's sibling's rare genetic disorder, Congenital Hyperinsulinism. We actually interview their mother on Episode 37 of It Happened To Me. As a high schooler, Amy started educating their peers and community about rare disease on Rare Disease Day every year. After moving to Boston, she started volunteering at a Community Engagement Liaison for the Rare Action Network (RAN), the advocacy branch of NORD, then became the RAN Massachusetts State Ambassador. Through this work, she started putting on Rare Disease Day events at Boston Children's Hospital, and now at Johns Hopkins Hospital as a genetic counselor. Rare Disease Day allows all rare disease stakeholders to come together to share their experiences and continue to learn. Amy is passionate about this global effort to raise awareness and advocate for improved quality of life, diagnosis, and access to care for Rare patients and families.   Want to listen to our other episodes with genetic counselors?    In Episode 4, our Executive Producer, Kira Dineen, who is also a genetic counselor, shares how genetic counselors can help people navigate having a rare disease.    In Episode 7, Genetic Counselor Karen Grinzaid explains prenatal and cancer genetic testing. Kira also joins as a guest host since this is her area of expertise.    Want to speak to a genetic counselor? Find one in your area via FindAGeneticCounselor.org.     Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.   

About our Guests: Dr. Alexis Bragg is a Clinical Associate Professor of Anesthesiology and Pediatrics at Keck School of Medicine of USC in Los Angeles.Dr. Chinyere Egbuta is a Senior Associate in Anesthesiology and Critical Care Medicine at Boston Children's Hospital and Assistant Professor of Anesthesia at Harvard Medical School.Dr. Sapna Kudchadkar is the Anesthesiologist-in-Chief of the Johns Hopkins Children's Center and Vice Chair for Pediatric Anesthesiology and Critical Care Medicine at Johns Hopkins University School of Medicine in Baltimore.Learning Objective:By the end of this podcast series, listeners should be able to discuss:An expert approach to the peri-intubation management of the critically-ill child including pre-oxygenation, apneic oxygenation +/- PPV, & the use of neuromuscular blockadeStrategies using direct vs. video laryngoscopy in academic PICUsRecognize the need and discuss potential strategies for ongoing maintenance of airway management skillsQuestions, comments or feedback? Please send us a message at this link (leave email address if you would like us to relpy) Thanks! -Alice & ZacSupport the showHow to support PedsCrit:Please complete our Listener Feedback SurveyPlease rate and review on Spotify and Apple Podcasts!Donations are appreciated @PedsCrit on Venmo , you can also support us by becoming a patron on Patreon. 100% of funds go to supporting the show. Please remember that all content during this episode is intended for educational and entertainment purposes only. It should not be used as medical advice. The views expressed during this episode by hosts and our guests are their own and do not reflect the official position of their institutions. If you have any comments, suggestions, or feedback-you can email us at pedscritpodcast@gmail.com. You can also check out our website at http://www.pedscrit.com. Thank you for listening to this episode of PedsCrit!

ANESTHESIOLOGY® 2025 in San Antonio, TopMedTalk's Andy Cumpstey and Kate Leslie talks with Susan Goobie, Associate Professor of Anesthesiology at Harvard Medical School and a Senior Associate in the Department of Anesthesiology, Critical Care & Pain Medicine at Boston Children's Hospital in Boston, USA. They discuss the specialty of non-cardiac pediatric surgery and her focus on patient blood management. Dr Goobie highlights the importance of 'blood health,' describing its three pillars: preoperative, intraoperative, and postoperative phases. She emphasizes preoperative anemia management, particularly in children, and shares strategies like iron supplementation and erythropoietin use. The discussion also covers key research papers on blood management and the practical applications of these strategies. BJA 2025; 135:375-81. doi: 10.1016/j.bja.2025.04.050 BJA Open 2025; 13:100372. doi: 10.016/j.bjao.2024.100372

In this punchy, practice-rich episode of The Forest School Podcast, Lewis and Wem unpack The Land — a 2016 documentary about an adventure playground in Wrexham — as screened via the Boston Children's Museum panel. They dig into filming that sits inside the play, what “looks like a dump” can signal to children, and how adventure playground philosophy intersects with Forest School when you factor in nature's needs, community, and inclusion. From risk versus hazard to loose parts in public parks, it is a tour through culture, pedagogy, and what real autonomy feels like.

As 2025 comes to a close and we look forward to season 7, we're airing the first part of Andrea's coverage on the Justina Pelletier case—the case that opened the Pandora's Box of medical kidnapping coverage in the media. *** Case Files is back with the first episode of a multi-part series on the Justina Pelletier case. Andrea and Dr. Bex covered this case in the subscriber feed, but, due to popular demand, decided to bring it to the main podcast. Justina Pelletier was a 14-year-old girl whose hospitalization at Boston Children's Hospital sparked a significant legal and media frenzy. Andrea and Dr. Bex's discussion covers the medical background of Justina's condition, including mitochondrial disease and somatoform disorder, the treatment plans proposed by the hospital, and the escalating conflict between her family and medical professionals.  *** Links/Resources:  Listen to Justina Pelletier Part 2: https://podcasts.apple.com/us/podcast/case-files-03-justina-pelletier-part-2-with-beau-berman/id1615637188 Listen to Justina Pelletier Part 3: https://podcasts.apple.com/us/podcast/case-files-04-justina-pelletier-part-3-with-beau-berman/id1615637188 Listen to Justina Pelletier Part 4: https://podcasts.apple.com/us/podcast/case-files-05-justina-pelletier-part-4/id1615637188 The Battle for Justina Pelletier: https://www.peacocktv.com/watch-online/tv/the-battle-for-justina-pelletier/5657866397468499112 Read about Justina Pelleiter in The Boston Globe: https://www.bostonglobe.com/metro/2020/01/12/pelletier/0I2dQrYlZFJ9tNzscaXdAO/story.html Join Patreon for a look at Andrea and Dr. Bex's previous coverage of the Justina Pelletier case: https://www.patreon.com/collection/507935 Preorder Andrea's new book The Mother Next Door: Medicine, Deception, and Munchausen by Proxy Click here to view our sponsors. Remember that using our codes helps advertisers know you're listening and helps us keep making the show! Subscribe on YouTube where we have full episodes and lots of bonus content. Follow Andrea on Instagram for behind-the-scenes photos: @andreadunlop Buy Andrea's books here. To support the show, go to Patreon.com/NobodyShouldBelieveMe or subscribe on Apple Podcasts where you can get all episodes early and ad-free and access exclusive ethical true crime bonus content. For more information and resources on Munchausen by Proxy, please visit MunchausenSupport.com The American Professional Society on the Abuse of Children's MBP Practice Guidelines can be downloaded here. Learn more about your ad choices. Visit podcastchoices.com/adchoices

In this podcast, Series 4, Chapter 6, Dr. Barsuk interviews Dr. Martin Pusic, Associate Professor of Pediatrics and Emergency Medicine at Harvard Medical School and Senior Associate Faculty for Boston Children's Hospital and Scholar-in-Residence at the Brigham Education Institute, Brigham & Women's Hospital in Boston, MA. Dr. Pusic serves as Director of the American Board of Medical Specialties Research and Education Foundation. He is a medical doctor practicing as a pediatric emergency physician but also received a Doctor of Philosophy in Cognition and Learning. His research focuses on learning analytics and the role and impact of research, data, and informatics on medical education and learning. Drs. Barsuk and Pusic talk about research in medical education and initiatives at the ABMS.

Fundraising is commonly portrayed as challenging, but for mission-driven leaders, it's also a privilege because they've got to be one of the helpers in this time period. In this episode, Dana Smiley joins Mallory to discuss donor stewardship through the lens of authenticity, purpose, and human connection. Join us as our guest dives into the exhaustion that comes with the role, the mindset shift that keeps teams grounded, and the power of transparent, genuine interactions.  Hilary Dana Smiley is a seasoned, result-driven fund development professional and currently the Assistant Vice President of Leadership Gifts at Boston Children's Hospital, where she oversees individual giving, direct response efforts, face-to-face fundraising, and volunteer board engagement. She leads with a genuine passion and purpose, believing in authentic enthusiasm strengthening donor relationships and fueling the mission of caring for children and families. In this episode, you will be able to: Learn how reconnecting with your purpose elevates donor communication. Understand the role of authenticity and passion in long-term donor relationships. Acquire new ways in navigating exhaustion and reframe hard fundraising moments. How to inspire generosity with transparent, human-centered communication.  Learn practices that strengthen stewardship and keep teams grounded in mission. Get all the resources from today's episode here.  Support for this show is brought to you by Practivated. Practivated delivers AI-powered donor conversation simulations that let fundraisers practice in a private, judgment‑free space—building confidence, refining messaging, and improving outcomes before the real conversation even begins. Developed by fundraising experts with real‑time coaching at its core, it's the smart way to walk into every donor interaction calm, prepared, and ready to connect. Learn more at practivated.com Connect with me:  Instagram: https://www.instagram.com/_malloryerickson/ Facebook: https://www.facebook.com/whatthefundraising YouTube: https://www.youtube.com/@malloryerickson7946 LinkedIn: https://www.linkedin.com/mallory-erickson-bressler/ Website: malloryerickson.com/podcast Loved this episode? Leave us a review and rating here: https://podcasts.apple.com/us/podcast/what-the-fundraising/id1575421652 If you haven't already, please visit our new What the Fundraising community forum. Check it out and join the conversation at this link. If you're looking to raise more from the right funders, then you'll want to check out my Power Partners Formula, a step-by-step approach to identifying the optimal partners for your organization. This free masterclass offers a great starting point.

In this episode of The World of Wishes Podcast we meet wish alumnus Lauren Potter. A top junior Olympian at 13, Lauren was a relentless competitor—until a rare, unnamed autoimmune disease left her gasping for breath. After months in Boston Children's Hospital and six rounds of chemotherapy, she chose hope over fear. When her doctor recommended Make‑A‑Wish, Lauren celebrated her recovery with an active, adventurous wish: surfing her first wave on Waikiki Beach, ATV trails through Kualoa Ranch, ziplining across thousand‑foot valleys, and a sunset on the North Shore that felt like peace. Years later, she committed to Yale volleyball, mentored other pulmonary patients, thanked her wish sponsors from the stage, and found her career intersecting with our Miami home—the Finker‑Frenkel Wish House—bringing her journey full circle. In this episode, Lauren shares how positivity, family, and a single wish can fuel a decade of momentum—and why she proudly wears “Wish Kid” as a badge of honor. Learn more about how can get involved at https://wish.org/sfla!Be sure to follow us @makeawishsfla on Instagram, Facebook, YouTube, Twitter, TikTok, and LinkedIn!Subscribe, Rate, & Review this podcast to support future episodes that will feature wish kids and parents' past and present, volunteers, donors, referral sources and everyone who contributes to this World of Wishes!

Alan Beggs, PhDDirector of the Manton Center for Orphan Disease ResearchSir Edwin and Lady Manton Professor of Pediatrics, Boston Children's HospitalHarvard Medical School, Boston, MA, USA Julie A. Parsons, MDHaberfield Endowed Chair in Pediatric Neuromuscular DisordersProfessor of Clinical Pediatrics and NeurologyUniversity of Colorado School of Medicine, Children's Hospital ColoradoAurora, CO, USADoctors Beggs and Parsons discuss the current status of gene therapies in rare neuromuscular disorders in this eight part podcast series. This is derived from the symposium that was presented at the MDA 2025 conference in Dallas, Texas, in March 2025 and is intended for healthcare professionals only. This podcast includes information about investigational compounds that do not yet have a regulatory approval or authorization for a specific indication. The safety and efficacy of the agents under investigation have not been established. In contents of this podcast, shall not be used in any manner to directly or indirectly promote or sell the product for unapproved uses. The ASPIRO clinical trial is on clinical hold since September 2021.In this part, Doctor Beggs will provide an explanation of AAV-mediated gene therapies.Alan Beggs, PhDAAV vectors, which I'm going to be talking about more today, or Adeno associated viral vectors are small viruses. Their DNA gets delivered into the cell and remains extrachromosomal. There are very rare occasional integrations, but the risk of oncogenesis as a result is significantly lower as a consequence of remaining extrachromosomal, though, we do have to think about what happens as the cells divide and potentially the durability of treatment is more limited.There have been a lot of movement and development over the years, starting back in the 1980s when the first AAV genomes were isolated and sequenced. This led to a development of methods to produce recombinant AAVs that would lack the genes necessary for viral replication, but contain a therapeutic gene you wish to deliver. Through this, the structure of AAVs have been developed. There have been isolation of a number of naturally occurring variants. You've heard of AAV8, AAV9, also RH 74, derived from a rhesus monkey for the RH. These have all been used in clinical trials. Then at the end I'll talk a little bit about directed evolution methods to actually engineer capsids with particular properties that are beneficial.Throughout this we've identified some of the issues that arise in this. It was initially thought that AAV vectors were non-immunogenic, but in fact there are immune responses not just to the viral payload to the therapeutic protein, but also to the viral vectors, and you're going to hear about that from Doctor Parsons. Over time, as we've come to understand these challenges, we've also been developing approaches to mitigate them. In terms of clinical trials and treatments, the very first studies were done back in the 1970s.By the early 2000, the very first clinical therapeutic was approved in China. It was actually an oncolytic virus carrying a p53 gene to treat head and neck cancers. By now there are over 40 approved treatments for various types of AAV delivered gene therapies. Of course, the ones we know a lot about are Zolgensma, which was approved in 2019, and Elevidys, which was approved last year. A number of challenges and then also a number of approaches to overcome those challenges. First of all, the preclinical data are not always sufficient to predict the response of a human patient.For example, in X-linked myotubular myopathy we had mouse and dog models that exhibited a myopathy but nothing else, and yet when we treated human patients, we discovered that patients with X-linked myotubular myopathy actually had a previously only poorly recognized hepatopathology that led to potential liver consequences following gene therapy. The animal models don't always predict the clinical outcome in humans.Also, we have small disease populations. These are rare diseases. It's important to understand the natural history of these diseases, understand the heterogeneity among the clinical population. It's very important to engage with families and with patients and communities, understand who might be at increased risk to treatment with one of these. This feeds into safety considerations. We need to think also about some of the immune responses. I think we're starting to learn, for example, with the gene therapies for Duchenne, and we know this from SMA that some patients get into trouble and others don't. We need to understand why that may be, and we don't know about the long term effects. This has been very recent.

Alan Beggs, PhDDirector of the Manton Center for Orphan Disease ResearchSir Edwin and Lady Manton Professor of Pediatrics, Boston Children's HospitalHarvard Medical School, Boston, MA, USAThe challenges that you've heard about are real. Some of them I think we could have foreseen others. There was no way to know until we actually started treating patients in clinic. But we now know that there are immune responses and also responses just to the viral load. As Julie mentioned, we're giving massive doses to these patients on the order of one times ten to the 14 viral genomes per kilogram.Think about the fact that when these capsids are manufactured, there's a certain percentage of empty capsid. The amount of protein that's being delivered to these patients can be massive. One of the approaches to mitigate some of the risk would be to lower the dose. While early studies demonstrated that in order to get adequate delivery to skeletal muscle, you need to give these very large doses. But what if we could engineer a viral capsid that would be potent at lower doses?There has been quite a bit of research in this area that's ongoing, and some new next generation vectors that are just starting to enter the clinic. In particular, there are a class of Myotropic viral vectors or capsids so-called RGD vectors. RGD refers to arginine, glycine, and aspartic acid, which are three residues which, when present at a particular point in the viral capsid proteins interact with integrin receptors that are specific for skeletal muscle. These viral capsids home to skeletal muscle and can deliver their genetic payload at much lower doses. There was one group of these developed in Germany by Theo Grimm's lab.These were the so-called AAV Myos, and simultaneously in Boston at the Broad Institute, a group of capsids was developed that were called Myo AAV. These were both based off of an AAV nine backbone. It's basically an AAV nine legacy vector with these three amino acids changed. Now Solid Biosciences also has their own independently derived vector that I believe is also an RGD vector. These vectors give us the potential then for more efficient and specific delivery to muscle cells.They may or may not target the liver depending on the particular virus. Some of them the risk to the liver is mitigated by delivering a lower dose. You can also develop these vectors in a way that will be liver targeted, that specifically less of it gets delivered to the vectors. These would be really, in my mind potentially third generation vectors.Strategies, there are a number of strategies. You heard about the immunomodulation regimens. I just talked about optimizing vector design. Also, Doctor Parsons mentioned earlier the fact that where you deliver so zolgensma is delivered Intrathecally. We get it to the place we need it, and we're less likely to have off target effects through other tissues.Then improved manufacturing is very important. I mentioned the fact that every viral preparation contains empty capsids. There are ways to minimize the production of empty capsids, and also effective ways to filter out and remove those empty capsids. This is actually a very important aspect that is being developed further by the CMO community. Then in summary, I think it's important to take a holistic approach when we're thinking about the development of AAV based gene therapies for neuromuscular disease.It starts from the fact that for any given disease we're interested in, we need to define the genetic etiology. Since these are gene directed therapies. We need to pay careful attention to the preclinical animal models. How accurately do they really reflect the human condition? Or are there potentially responses in our human patients that we haven't experienced in the animals? It's important to understand the natural history and the patient population.Recognize that there's extensive heterogeneity, not just in age and severity, but also potentially in underlying susceptibilities in our patients. We have a group of toxicities that we know about and can anticipate. But as Julie was saying, you need to be really careful and think about any potential unexpected SAEs. And then finally I mentioned the manufacturing aspect, the development of newer vectors and quality control aspects that go into making a safe and effective therapeutic.In the next part. Doctor Parsons will discuss clinical safety and efficacy observed in AAV mediated gene therapy programs in DMD, SMA, and XLMTM.

Alan Beggs, PhDDirector of the Manton Center for Orphan Disease ResearchSir Edwin and Lady Manton Professor of Pediatrics, Boston Children's HospitalHarvard Medical School, Boston, MA, USA Julie A. Parsons, MDHaberfield Endowed Chair in Pediatric Neuromuscular DisordersProfessor of Clinical Pediatrics and NeurologyUniversity of Colorado School of Medicine, Children's Hospital ColoradoAurora, CO, USAThe ASPIRO Clinical Trial is on clinical hold since September 2021. In this part, Doctors Beggs and Parsons will discuss key issues on gene therapy development.Question: Is there a standardized immunomodulation regimen being considered for gene therapy?Julie A. Parsons, MDAs I mentioned, right now, I think there are a number of different concepts that are being utilized. We don't really have a recommended standard regimen at this point. There are a number of different trials that are ongoing looking at trying to answer this question. In some of the clinical trials, there is an immune modulating regimen that is being put in place but being looked at. There isn't anything that we have as a standard at this moment for all gene transfer therapies, but I'm hopeful that we will come up with something that really makes sense in each patient population as we go forward with specific gene transfer therapies.Question: What are the long-term implications, safety and efficacy of a one-time gene therapy in pediatric patients with neuromuscular diseases?Alan Beggs, PhDOne question is the efficacy. For example, Donovan Decker's story, he had an experimental treatment of one muscle. It was a phase one safety trial, and he knew that nothing was going to come of it in terms of direct benefit to him. As a result, though, 25, 30 years later, he still has a tighter against AAV vectors. He's not a candidate for gene therapy under current protocols, although there's a lot of work going on to redosing. But for now, it's a one-time treatment. What you get is what you get, and there's not a chance to go back and do it again.The other question is durability. We really don't know about the long-term durability for these treatments. I should say that, for example, in the studies that we did, David Mack, who's here in the audience, managed a dog colony for a dog model of excellent tubular myopathy. Those animals lived 10 years in a... We never used the C-word, but they were cured. They were healthy, happy, normal dogs who would have had to be put down at 6 months of age otherwise. And then, as we heard, I'll let you talk about the concern for unanticipated SAEs as time goes on, but I think there's other aspects we need to think about.Julie A. Parsons, MDYeah. I think that this is really the key question that all of us are going to need to help answer over the next several years. Efficacy, we're looking at outcomes, and outcomes come in a variety of flavors. I think we do a decent job with motor outcomes. We don't do a decent job with some other outcomes. I think we need to look more broadly in terms of what we mean in terms of beneficial outcomes and really take some of those cues from the patients themselves about if these are efficacious treatments, because, again, the risk is high as we deliver these agents, and we need to know that it's worth it to the patients and families.In terms of safety, we're working on it. There are all sorts of things that are coming forward as issues with these patients. I think that collectively as a community, that our responsibility is to follow patients for the long term. There are lots of registries and outcome studies. We're not very good as a community about reporting adverse events to central groups. We're not great about broadcasting that to each other in real-time. I think those are things that we really need to work on as a community in terms of helping with the safety issues so that we all have a communal better understanding of what some of those issues are.

Today we are featuring two articles that relate to moving genetics into mainstream healthcare. In our first segment, we discuss polygenic risk scores and the transition from research to clinical use. Our second segment focuses on hypermobility Ehlers Danlos Syndrome and the triaging of clinical referrals.    Segment 1: Readiness and leadership for the implementation of polygenic risk scores: Genetic healthcare providers' perspectives in the hereditary cancer context   Dr Rebecca Purvis is a post-doctoral researcher, genetic counsellor, and university lecturer and coordinator at The Peter MacCallum Cancer Centre and The University of Melbourne, Melbourne, Australia. Dr Purvis focuses on health services delivery, using implementation science to design and evaluate interventions in clinical genomics, risk assessment, and cancer prevention.   In this segment we discuss: - Why leadership and organizational readiness are critical to successful clinical implementation of polygenic risk scores (PRS). - How genetic counselors' communication skills position them as key leaders as PRS moves from research into practice. - Readiness factors healthcare systems should assess, including culture, resources, and implementation infrastructure. - Equity, standardization, and implementation science as essential tools for responsible and sustainable PRS adoption. Segment 2: A qualitative investigation of Ehlers-Danlos syndrome genetics triage   Kaycee Carbone is  a genetic counselor at Boston Children's Hospital in the Division of Genetics and Genomics as well as the Vascular Anomalies Center. Her clinical interests include connective tissue disorders, overgrowth conditions, and somatic and germline vascular anomaly conditions. She completed my M.S. in Genetic Counseling at the MGH Institute of Health Professions in 2023. The work she discusses here, "A qualitative investigation of Ehlers-Danlos syndrome genetics triage," was completed as part of a requirement for this graduate program.    In this segment we discuss: - Why genetics clinics vary widely in how they triage referrals for hypermobile Ehlers-Danlos syndrome (hEDS). - How rising awareness of hEDS has increased referral volume without clear guidelines for diagnosis and care. - The ethical and emotional challenges genetic counselors face when declining hEDS referrals. - The need for national guidelines and clearer care pathways to improve access and coordination for EDS patients. Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield.

Results of a phase II trial of olaparib in combination with ceralasertib in patients with recurrent and unresectable osteosarcomaOsteosarcoma Webinar Series: Katie Janeway, MD and Suzanne Forrest, MD join us on OsteoBites to discuss results of a phase II trial of olaparib in combination with ceralasertib in patients with recurrent and unresectable osteosarcoma.Dr. Janeway received her MD and MMSc from Harvard Medical School. She completed her pediatrics residency and her Pediatric Hematology-Oncology fellowship at Boston Children's Hospital and Dana-Farber Cancer Institute. She is an Associate Professor of Pediatrics, a Senior Physician who cares for young people with sarcoma, and Director of Clinical Genomics. Dr. Janeway's research is focused on precision oncology and bone sarcomas. She leads clinical trials both as an independent investigator and as the Chair of the Children's Oncology Group (COG) Bone Tumor Committee. The Janeway Laboratory leads several studies, which have enrolled and sequenced more than 2,500 patients with childhood cancers. They are using this data to deepen the understanding of clinical and genomic factors explaining prognosis and treatment response, and resistance, with a focus on sarcomas. In collaboration with Count Me In, the group is innovating patient partnerships in sarcoma research.Dr. Forrest completed her medical school training at Yale University, followed by pediatrics training in the Boston Combined Residency Program. She then pursued a pediatric oncology fellowship at Dana-Farber Cancer Institute / Boston Children's Hospital. Currently, she serves as an Assistant Professor of Pediatrics at Harvard Medical School and an Attending Physician in the Department of Hematology/Oncology at Dana-Farber / Boston Children's Cancer and Blood Disorders Center. Her research focuses on developing novel clinical trials that utilize cancer genomics to guide treatment strategies for pediatric solid tumors.After a short presentation on this research, they will take questions from attendees. Share your questions in advance with us at Christina@MIBAgents.org.

Send us a textThree third-year fellows present diverse research at Hot Topics. Dr. Tanima from Boston Children's demonstrates lung ultrasound's potential to predict respiratory support duration in 30+ week infants, with first six-hour exams showing strongest correlation—suggesting possible replacement for admission chest x-rays. Dr. Juhi from University of Illinois in Chicago applies large language models to extract IVH prognostic variables from AI literature, identifying critical gaps including absence of resolution prediction studies. Dr. Hailey conducts qualitative research on physician experiences with NICU mortality/morbidity, identifying three impactful loss categories: outcome-expectation mismatches, meaningful relationships, and weight of responsibilities. Their work exemplifies emerging neonatologist interests in point-of-care ultrasound, artificial intelligence applications, and clinician wellbeing. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below. Enjoy!

Sharc Creative and Westchester Talk Radio proudly celebrated the 10th annual Stuff The Truck on Saturday and Sunday, December 6th and 7th, 2025, hosted at DeCicco & Sons locations in Sleepy Hollow and Armonk—where Quality First is lived every day. This community tradition once again rallied support for Feeding Westchester, helping bring fresh, nutritious meals to children, seniors, and families at a time when rising costs are making everyday essentials harder to afford. Thanks to generous holiday giving and the backing of sponsors including Norcom, Inspiria, 107.1 The Peak, 100.7 WHUD, Robison, PCSB Bank, Shleppers Moving & Storage, Purple Frog Graphics, and Boston Children's Health Physicians, Stuff The Truck continued its mission to ensure no neighbor goes hungry. UPDATE: As of 12/9/2025, our food collection equates to over 10,000 meals!

Sharc Creative and Westchester Talk Radio proudly celebrated the 10th annual Stuff The Truck on Saturday and Sunday, December 6th and 7th, 2025, hosted at DeCicco & Sons locations in Sleepy Hollow and Armonk—where Quality First is lived every day. This community tradition once again rallied support for Feeding Westchester, helping bring fresh, nutritious meals to children, seniors, and families at a time when rising costs are making everyday essentials harder to afford. Thanks to generous holiday giving and the backing of sponsors including Norcom, Inspiria, 107.1 The Peak, 100.7 WHUD, Robison, PCSB Bank, Shleppers Moving & Storage, Purple Frog Graphics, and Boston Children's Health Physicians, Stuff The Truck continued its mission to ensure no neighbor goes hungry.UPDATE: As of 12/9/2025, our food collection equates to over 10,000 meals!

Sharc Creative and Westchester Talk Radio proudly celebrated the 10th annual Stuff The Truck on Saturday and Sunday, December 6th and 7th, 2025, hosted at DeCicco & Sons locations in Sleepy Hollow and Armonk—where Quality First is lived every day. This community tradition once again rallied support for Feeding Westchester, helping bring fresh, nutritious meals to children, seniors, and families at a time when rising costs are making everyday essentials harder to afford. Thanks to generous holiday giving and the backing of sponsors including Norcom, Inspiria, 107.1 The Peak, 100.7 WHUD, Robison, PCSB Bank, Shleppers Moving & Storage, Purple Frog Graphics, and Boston Children's Health Physicians, Stuff The Truck continued its mission to ensure no neighbor goes hungry.UPDATE: As of 12/9/2025, our food collection equates to over 10,000 meals!

Sharc Creative and Westchester Talk Radio proudly celebrated the 10th annual Stuff The Truck on Saturday and Sunday, December 6th and 7th, 2025, hosted at DeCicco & Sons locations in Sleepy Hollow and Armonk—where Quality First is lived every day. This community tradition once again rallied support for Feeding Westchester, helping bring fresh, nutritious meals to children, seniors, and families at a time when rising costs are making everyday essentials harder to afford. Thanks to generous holiday giving and the backing of sponsors including Norcom, Inspiria, 107.1 The Peak, 100.7 WHUD, Robison, PCSB Bank, Shleppers Moving & Storage, Purple Frog Graphics, and Boston Children's Health Physicians, Stuff The Truck continued its mission to ensure no neighbor goes hungry.UPDATE: As of 12/9/2025, our food collection equates to over 10,000 meals!

Sharc Creative and Westchester Talk Radio proudly celebrated the 10th annual Stuff The Truck on Saturday and Sunday, December 6th and 7th, 2025, hosted at DeCicco & Sons locations in Sleepy Hollow and Armonk—where Quality First is lived every day. This community tradition once again rallied support for Feeding Westchester, helping bring fresh, nutritious meals to children, seniors, and families at a time when rising costs are making everyday essentials harder to afford. Thanks to generous holiday giving and the backing of sponsors including Norcom, Inspiria, 107.1 The Peak, 100.7 WHUD, Robison, PCSB Bank, Shleppers Moving & Storage, Purple Frog Graphics, and Boston Children's Health Physicians, Stuff The Truck continued its mission to ensure no neighbor goes hungry.UPDATE: As of 12/9/2025, our food collection equates to over 10,000 meals!

Sharc Creative and Westchester Talk Radio proudly celebrated the 10th annual Stuff The Truck on Saturday and Sunday, December 6th and 7th, 2025, hosted at DeCicco & Sons locations in Sleepy Hollow and Armonk—where Quality First is lived every day. This community tradition once again rallied support for Feeding Westchester, helping bring fresh, nutritious meals to children, seniors, and families at a time when rising costs are making everyday essentials harder to afford. Thanks to generous holiday giving and the backing of sponsors including Norcom, Inspiria, 107.1 The Peak, 100.7 WHUD, Robison, PCSB Bank, Shleppers Moving & Storage, Purple Frog Graphics, and Boston Children's Health Physicians, Stuff The Truck continued its mission to ensure no neighbor goes hungry.UPDATE: As of 12/9/2025, our food collection equates to over 10,000 meals!

Sharc Creative and Westchester Talk Radio proudly celebrated the 10th annual Stuff The Truck on Saturday and Sunday, December 6th and 7th, 2025, hosted at DeCicco & Sons locations in Sleepy Hollow and Armonk—where Quality First is lived every day. This community tradition once again rallied support for Feeding Westchester, helping bring fresh, nutritious meals to children, seniors, and families at a time when rising costs are making everyday essentials harder to afford. Thanks to generous holiday giving and the backing of sponsors including Norcom, Inspiria, 107.1 The Peak, 100.7 WHUD, Robison, PCSB Bank, Shleppers Moving & Storage, Purple Frog Graphics, and Boston Children's Health Physicians, Stuff The Truck continued its mission to ensure no neighbor goes hungry.UPDATE: As of 12/9/2025, our food collection equates to over 10,000 meals!

Enid Martinez, MD is a Senior Associate in Critical Care at Boston Children's Hospital, and an Assistant Professor of Anaesthesia at Harvard Medical School. She is the Director of the Pediatric Critical Care Nutrition Program in the Division of Critical Care Medicine and Principal Investigator for a clinical-translational research program on gastrointestinal function and nutrition in pediatric critical illness.Learning Objectives:By the end of this podcast, listeners should be able to:Recognize the impact of nutritional status on outcomes of critically-ill children.Describe the key aspects of the metabolic stress response in critical illness.Discuss a clinical approach to accurately estimating and prescribing nutrition in critically-ill children.Reflect on an expert's approach to managing aspects of nutrition in critically-ill children where there may not be high-quality evidence. Selected references:Mehta et al. Guidelines for the Provision and Assessment of Nutrition Support Therapy in the Pediatric Critically Ill Patient: Society of Critical Care Medicine and American Society for Parenteral and Enteral Nutrition. JPEN J Parenter Enteral Nutr. 2017 Jul;41(5):706-742. doi: 10.1177/0148607117711387. Epub 2017 Jun 2. PMID: 28686844. Fivez et al. Early versus Late Parenteral Nutrition in Critically Ill Children. N Engl J Med. 2016 Mar 24;374(12):1111-22. doi: 10.1056/NEJMoa1514762. Epub 2016 Mar 15. PMID: 26975590.Questions, comments or feedback? Please send us a message at this link (leave email address if you would like us to relpy) Thanks! -Alice & ZacSupport the showHow to support PedsCrit:Please complete our Listener Feedback SurveyPlease rate and review on Spotify and Apple Podcasts!Donations are appreciated @PedsCrit on Venmo , you can also support us by becoming a patron on Patreon. 100% of funds go to supporting the show. Please remember that all content during this episode is intended for educational and entertainment purposes only. It should not be used as medical advice. The views expressed during this episode by hosts and our guests are their own and do not reflect the official position of their institutions. If you have any comments, suggestions, or feedback-you can email us at pedscritpodcast@gmail.com. You can also check out our website at http://www.pedscrit.com. Thank you for listening to this episode of PedsCrit!

In this Complex Care Journal Club podcast episode, Dr. Jody Lin discusses a qualitative study of shared decision-making for neuromuscular scoliosis surgery in children with medical complexity. She describes a broad range of family values and preferences that may guide decision-making, implications for clinical practice, and next steps from this work.‌ SPEAKER Jody Lin, MD, MS Pediatric Hospitalist Assistant Professor of Pediatrics Division of Inpatient Medicine University of Utah HOST Kathleen Huth, MD, MMSc Pediatrician, Complex Care Service, Division of General Pediatrics Boston Children's Hospital Assistant Professor of Pediatrics Harvard Medical School DATE Initial publication date: December 8, 2025. JOURNAL CLUB ARTICLE Lin JL, Devereaux T, Simon TD, Kaphingst KA, Zhu A, Narayanan U, Berry ABL, Eppich KG, Stoddard G, Smith JT, Andras L, Heflin J, Keenan HT, Asch SM, Fagerlin A. Caregiver Values and Preferences Related to Surgical Decision-Making for Children with Medical Complexity. J Pediatr. 2025 Jan;276:114366. doi: 10.1016/j.jpeds.2024.114366. Epub 2024 Oct 19. PMID: 39428089; PMCID: PMC11645212. OTHER ARTICLES REFERENCED Courageous Parents Network. Scoliosis and spine / spinal surgery: facts and decision-making. https://courageousparentsnetwork.org/guides/decision-making-around-spinal-fusion-surgery/. Accessed November 14, 2025. Lin JL, Clark CL, Halpern-Felsher B, Bennett PN, Assis-Hassid S, Amir O, Nunez YC, Cleary NM, Gehrmann S, Grosz BJ, Sanders LM. Parent Perspectives in Shared Decision-Making for Children With Medical Complexity. Acad Pediatr. 2020 Nov-Dec;20(8):1101-1108. doi: 10.1016/j.acap.2020.06.008. Epub 2020 Jun 12. PMID: 32540424; PMCID: PMC7655593. Lin JL, Cohen E, Sanders LM. Shared Decision Making among Children with Medical Complexity: Results from a Population-Based Survey. J Pediatr. 2018 Jan;192:216-222. doi: 10.1016/j.jpeds.2017.09.001. Epub 2017 Nov 6. PMID: 29102046; PMCID: PMC5732902. Lin JL, Tawfik DS, Gupta R, Imrie M, Bendavid E, Owens DK. Health and Economic Outcomes of Posterior Spinal Fusion for Children With Neuromuscular Scoliosis. Hosp Pediatr. 2020 Mar;10(3):257-265. doi: 10.1542/hpeds.2019-0153. PMID: 32079619; PMCID: PMC7041549.‌ TRANSCRIPT https://cdn.bfldr.com/D6LGWP8S/at/xcz7qm4n2b9rn636rrnq/Jody_Lin_Final_transcript_12-4-25.pdf. Clinicians across healthcare professions, advocates, researchers, and patients/families are all encouraged to engage and provide feedback! You can recommend an article for discussion using this form: https://forms.gle/Bdxb86Sw5qq1uFhW6. Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children's Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open-access thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu CITATION Lin JL, Huth K. Exploring What Matters: What Families Value in Complex Surgical Decision-Making. 12/2025. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/exploring-what-matters-what-families-value-in-complex-surgical-decision-making.

Sonal N. Shah, MD, MPH, Division of Emergency Medicine, Boston Children's Hospital, Harvard Medical School, discusses the Rational Clinical Examination article "Has This Child Experienced Physical Abuse?" with JAMA Associate Editor David L. Simel, MD, MHS. Related Content: Has This Child Experienced Physical Abuse?

Enid Martinez, MD is a Senior Associate in Critical Care at Boston Children's Hospital, and an Assistant Professor of Anaesthesia at Harvard Medical School. She is the Director of the Pediatric Critical Care Nutrition Program in the Division of Critical Care Medicine and Principal Investigator for a clinical-translational research program on gastrointestinal function and nutrition in pediatric critical illness. Learning Objectives:By the end of this podcast, listeners should be able to:Recognize the impact of nutritional status on outcomes of critically-ill children.Describe the key aspects of the metabolic stress response in critical illness.Discuss a clinical approach to accurately estimating and prescribing nutrition in critically-ill children.Reflect on an expert's approach to managing aspects of nutrition in critically-ill children where there may not be high-quality evidence. Selected references:Mehta et al. Guidelines for the Provision and Assessment of Nutrition Support Therapy in the Pediatric Critically Ill Patient: Society of Critical Care Medicine and American Society for Parenteral and Enteral Nutrition. JPEN J Parenter Enteral Nutr. 2017 Jul;41(5):706-742. doi: 10.1177/0148607117711387. Epub 2017 Jun 2. PMID: 28686844. Fivez et al. Early versus Late Parenteral Nutrition in Critically Ill Children. N Engl J Med. 2016 Mar 24;374(12):1111-22. doi: 10.1056/NEJMoa1514762. Epub 2016 Mar 15. PMID: 26975590.Questions, comments or feedback? Please send us a message at this link (leave email address if you would like us to relpy) Thanks! -Alice & ZacSupport the showHow to support PedsCrit:Please complete our Listener Feedback SurveyPlease rate and review on Spotify and Apple Podcasts!Donations are appreciated @PedsCrit on Venmo , you can also support us by becoming a patron on Patreon. 100% of funds go to supporting the show. Thank you for listening to this episode of PedsCrit. Please remember that all content during this episode is intended for educational and entertainment purposes only. It should not be used as medical advice. The views expressed during this episode by hosts and our guests are their own and do not reflect the official position of their institutions. If you have any comments, suggestions, or feedback-you can email us at pedscritpodcast@gmail.com. Check out http://www.pedscrit.com for detailed show notes. And visit @critpeds on twitter and @pedscrit on instagram for real time show updates.

This week we go back in time to 2020 to delve into the topic of fellow wellness and review a work from the Boston Children's group on fellow fears and stressors when beginning their training. Are there patterns amongst the fellow concerns that can be identified and used to inform interventions to help allay these fears and reduce the stress? We speak with Dr. David Brown, Associate Professor of Pediatrics, Harvard Medical School and also Dr. Tony Pastor who was then the ACHD Fellow at Boston Children's Hospital/Brigham and Women's Hospital about their thoughts on fellow fears and stressors as well as fellow (and doctor) wellness. doi: 10.1007/s00246-019-02276-z.

Milk has long been sold as the key to strong bones, but research challenges that claim: many people don't tolerate dairy, calcium needs are lower than advertised, and higher milk intake doesn't necessarily prevent fractures. Politics and industry marketing helped set “three glasses a day,” even though healthy bones depend more on overall diet and lifestyle—things like vitamin D, movement, and avoiding soda, excess sugar, and stress that drive calcium loss. Dairy may be helpful for some diets, but it can also trigger bloating, acne, congestion, or digestive issues. The good news is that strong bones and good nutrition are still very doable without cow's milk—think leafy greens, sardines, almonds, chia, and sunshine for vitamin D. In this episode, I discuss, along with Dr. David Ludwig and Dr. Elizabeth Boham why bone health depends more on diet, lifestyle, and nutrient balance than on dairy. David S. Ludwig, MD, PhD, is an endocrinologist and researcher at Boston Children's Hospital, Professor of Pediatrics at Harvard Medical School, and Professor of Nutrition at the Harvard T.H. Chan School of Public Health. He co-directs the New Balance Foundation Obesity Prevention Center and founded the Optimal Weight for Life (OWL) program, one of the nation's largest clinics for children with obesity. For over 25 years, Dr. Ludwig has studied how diet composition affects metabolism, body weight, and chronic disease risk, focusing on low glycemic index, low-carbohydrate, and ketogenic diets. Called an “obesity warrior” by Time Magazine, he has championed policy changes to improve the food environment. A Principal Investigator on numerous NIH and philanthropic grants, Dr. Ludwig has published over 200 scientific articles and three books for the public, including the #1 New York Times bestseller Always, Hungry? Dr. Elizabeth Boham is Board Certified in Family Medicine from Albany Medical School, and she is an Institute for Functional Medicine Certified Practitioner and the Medical Director of The UltraWellness Center. Dr. Boham lectures on a variety of topics, including Women's Health and Breast Cancer Prevention, insulin resistance, heart health, weight control and allergies. She is on the faculty for the Institute for Functional Medicine. This episode is brought to you by BIOptimizers. Head to bioptimizers.com/hyman and use code HYMAN to save 15%. Full-length episodes can be found here:Why Most Everything We Were Told About Dairy Is Wrong Is It Okay To Eat Cheese And What Types Of Dairy Should You Avoid? Is Lactose Intolerance Causing Your Gut Issues?

This week, I'm joined by Dr. Felice Chan, a Chinese medicine doctor who bridges Eastern and Western approaches to healing after years studying allopathic medicine including shadowing an oncology neurosurgeon and working at Boston Children's Hospital. We dive into the fascinating contrasts between healthcare in Hong Kong and the U.S., the 5,000-year misunderstanding around acupuncture, and how our gut health connects to anxiety, depression, and even our skin. Dr. Chan shares practical, science-backed tips to reduce bloating, support digestion, curb sugar cravings, and shift your mindset around food—plus her honest takes on popular health trends like intermittent fasting and cold plunging. We also get into cosmetic acupuncture, what not to do on your period, how emotions manifest physically, and how to “eat your skincare” by nourishing your blood and creating a vibrant, resilient body from the inside out.This episode is brought to you by:Get 20% off your order at Bakedbymelissa.com/BLONDE.Go to ProLonLife.com/BLONDE for 15% off plus a $40 bonus gift when you subscribe to their 5-day program.Visit Hungryroot.com/blonde and use code blonde for 40% off your first box.Go to fromourplace.com/BLONDE and use code BLONDE for 10% off sitewide.Get $10 off your first month's subscription and enjoy free shipping when you visit Nutrafol.com and use promo code BLONDE.Go to Quince.com/blonde for 365-day returns, plus free shipping on your order.Please note that this episode may contain paid endorsements and advertisements for products and services. Individuals on the show may have a direct or indirect financial interest in products or services referred to in this episode.Produced by Dear Media.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.