Podcasts about stiff person syndrome

Dr. Shuvro Roy and Dr. Amanda Piquet discuss a brief overview of stiff person syndrome, as well as the trial and the trial results.  Read more about this abstract on the AAN website.   Show transcript:  Dr. Shuvro Roy: Hi, this is Shuvro Roy from the University of Washington and welcome to today's Neurology Minute. I just wrapped a longer conversation with Amanda Piquet from the University of Colorado Anschutz School of Medicine. We were just talking about the recent Phase 2 trial evaluating Miv-cel Kyverna Therapeutics' anti-CD19 CAR T-cell therapy in patients with Stiff Person Syndrome. Amanda, would you mind taking us through a brief overview of SPS as well as the trial and their trial results? Dr. Amanda Piquet: So Stiff Person Syndrome, or SPS, is a rare disabling autoimmune neurologic disease with a major unmet need. About 80% of patients ultimately lose their mobility and we currently have no FDA approved therapies. Existing treatments like IVIG, rituximab, and plasmapheresis are all used off label, often requiring chronic dosing and frequently failing to stop progression. KYSA-8 is a registrational Phase 2 study of 26 patients with refractory SPS. Patients experienced rapid, statistically significant and clinically meaningful improvement across all primary and secondary endpoints. Primary endpoint was the timed 25-foot walk. And this improved by a median of 46% at 16 weeks. Of patients requiring walking aids at baseline, about two thirds no longer needed them by week 16 to complete that 25-foot walk. Some patients who had struggled to walk were even able to run again after treatment. Another key finding was that all patients discontinued chronic immune therapies and remained off treatment as of the last follow-up. From a safety standpoint, miv-cel was generally well tolerated, with no high grade CRS or ICANS observed. In my opinion, these outcomes are unlike anything we've seen previously with Stiff Person Syndrome and may represent a paradigm shift, not only for SPS, but potentially for other antibody-mediated neurologic diseases more broadly. Dr. Shuvro Roy: Just curious, are there any upcoming implications for the application of this treatment for patients, you think, in the coming year or so? Dr. Amanda Piquet: Kyverna, the company who developed miv-cel, has initiated a rolling BLA with the FDA for potential approval and this would be, if approved, the first CAR-T therapy for SPS. So we're anxiously awaiting the outcome of that process. Dr. Shuvro Roy: Fantastic. Amanda, thank you so much for your time. And if you are intrigued and want to know more details behind the findings in the study as well as a conversation around CAR-T therapy for autoimmune neurologic disease as a whole, I encourage you to check out the Neurology Podcast feed for our full conversation there. Thanks for tuning in.  

Dr. Shuvro Roy and Dr. Amanda Piquet discuss a brief overview of stiff person syndrome, as well as the trial and the trial results.  Read more about this abstract on the AAN website.   Show transcript:  Dr. Shuvro Roy: Hi, this is Shuvro Roy from the University of Washington and welcome to today's Neurology Minute. I just wrapped a longer conversation with Amanda Piquet from the University of Colorado Anschutz School of Medicine. We were just talking about the recent Phase 2 trial evaluating Miv-cel Kyverna Therapeutics' anti-CD19 CAR T-cell therapy in patients with Stiff Person Syndrome. Amanda, would you mind taking us through a brief overview of SPS as well as the trial and their trial results? Dr. Amanda Piquet: So Stiff Person Syndrome, or SPS, is a rare disabling autoimmune neurologic disease with a major unmet need. About 80% of patients ultimately lose their mobility and we currently have no FDA approved therapies. Existing treatments like IVIG, rituximab, and plasmapheresis are all used off label, often requiring chronic dosing and frequently failing to stop progression. KYSA-8 is a registrational Phase 2 study of 26 patients with refractory SPS. Patients experienced rapid, statistically significant and clinically meaningful improvement across all primary and secondary endpoints. Primary endpoint was the timed 25-foot walk. And this improved by a median of 46% at 16 weeks. Of patients requiring walking aids at baseline, about two thirds no longer needed them by week 16 to complete that 25-foot walk. Some patients who had struggled to walk were even able to run again after treatment. Another key finding was that all patients discontinued chronic immune therapies and remained off treatment as of the last follow-up. From a safety standpoint, miv-cel was generally well tolerated, with no high grade CRS or ICANS observed. In my opinion, these outcomes are unlike anything we've seen previously with Stiff Person Syndrome and may represent a paradigm shift, not only for SPS, but potentially for other antibody-mediated neurologic diseases more broadly. Dr. Shuvro Roy: Just curious, are there any upcoming implications for the application of this treatment for patients, you think, in the coming year or so? Dr. Amanda Piquet: Kyverna, the company who developed miv-cel, has initiated a rolling BLA with the FDA for potential approval and this would be, if approved, the first CAR-T therapy for SPS. So we're anxiously awaiting the outcome of that process. Dr. Shuvro Roy: Fantastic. Amanda, thank you so much for your time. And if you are intrigued and want to know more details behind the findings in the study as well as a conversation around CAR-T therapy for autoimmune neurologic disease as a whole, I encourage you to check out the Neurology Podcast feed for our full conversation there. Thanks for tuning in.  

Dr. Shuvro Roy talks with Dr. Amanda L. Piquet about the efficacy and safety of miv-cel in patients with stiff person syndrome.  Read more about this abstract on the AAN website.   Disclosures can be found at Neurology.org. 

Chrisy and Dr. Kingzett, two women I met when we were all trying to raise our rare voices a little louder. Christine “Chrisy” Klavitter and Dr. Kristen Kingzett are both rare disease advocates, but more importantly, they are people living this reality every single day. Chrisy lives with Stiff Person Syndrome and Myositis. Kristen is an Internal Medicine physician and an ultra-rare cancer survivor. Together, we talk about what life with rare disease actually looks like—beyond the statistics. From delayed diagnoses (which can take years, even decades) to the emotional and physical toll of navigating a fragmented healthcare system, this conversation is honest, eye-opening, and necessary. More than 30 million people in the U.S. are living with a rare disease—defined as affecting fewer than 200,000 people. Yet despite those numbers, patients are still too often misunderstood, misdiagnosed, or left to navigate care on their own. Chrisy and Kristen share what an average day can look like, the full-time job of managing health (or caring for someone who is), and what happens when patients have to push back—even redirect—the so-called experts. We also dig into the bigger questions: Why does diagnosis still take so long—and how do we fix it? What do providers, institutions, and policymakers still not understand? What do you say to someone who believes “there's nothing I can do”? And where are we actually seeing progress in healthcare? What stands out most is this: patients are not passive participants in their care—they are often the ones holding it all together. About my guests: Dr. Kristen Kingzett is an Internal Medicine physician, educator, and advocate who brings both professional expertise and lived experience, including Juvenile Idiopathic Arthritis, Common Variable Immune Deficiency, and an ultra-rare cancer. She serves on Michigan's Rare Disease Advisory Council and Legislative Disability Caucus. Chrisy Klavitter is a healthcare policy and patient advocate, biologist, and recreation therapist. Living with Stiff Person Syndrome and Myositis, she works to bridge communication gaps between patients, providers, researchers, and policymakers to improve care for complex conditions. The takeaway? Rare disease may be defined by numbers, but its impact is anything but small. And if we build a healthcare system that works for rare disease patients, we build one that works better for everyone. Like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredNew: Shop our merchandise! https://thebonnellfoundation.org/product-shop/Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

Send us Fan MailA rare autoimmune disorder can feel invisible until it steals someone's movement, and stiff person syndrome is one of the starkest examples. We break down what's happening in the nervous system when GABA-driven “calm down” signals get disrupted by autoantibodies, why symptoms can escalate into severe spasms and rigidity, and why the condition has captured public attention through Celine Dion's story.Then we shift from symptoms to source: an experimental CAR T-cell therapy designed to eliminate the B cells that produce the harmful antibodies in stiff person syndrome. We walk through what a phase two clinical trial reported, including real-world changes like faster walking and fewer people needing walking aids, plus the caveats that matter for anyone following medical research such as side effects, small sample sizes, and unknown durability.Pet parents get a deep dive too. Chronic kidney disease in cats is common, progressive, and often detected late, so we cover a promising approach involving AIM protein and recombinant AIM therapy (RAIM) injections, including how researchers tracked toxins like indoxyl sulfate and what survival outcomes looked like over a year. Finally, plant scientist Dr. Vikram Baliga joins us to make botany feel urgent and strange in the best way, from ancient bristlecone pine “time capsules” to crown shyness and the science of how plants sense nearby competitors, plus a glimpse at nitrogen-fixing corn research that could reduce fertilizer dependence.Dr. Vikram's linksAll our social links are here!Support the showFor Science, Empathy, and Cuteness!Being Kind is a Superpower.All our social links are here!

Good morning from Pharma Daily: the podcast that brings you the most important developments in the pharmaceutical and biotech world. Today, we're diving into a series of pivotal events shaping the industry. Starting with Amneal Pharmaceuticals' strategic acquisition of Kashiv Biosciences for $1.1 billion, this move highlights what many are calling the "golden era" for biosimilars. These cost-effective alternatives to branded biologics are becoming increasingly crucial in expanding access to essential therapies. Amneal's acquisition underscores a strategic positioning to enhance its portfolio and market presence, reflecting a broader trend towards embracing biosimilars to potentially reduce healthcare costs. In another significant development, Merck has received FDA approval for its novel HIV treatment pill, Idvynso. This once-daily combination offers a new mechanism of action, reinforcing Merck's position in the HIV market while emphasizing the industry's ongoing innovation aimed at improving patient adherence and outcomes with simpler dosing regimens. Concurrently, Merck's partnership with Google in a billion-dollar enterprise deal underscores a growing trend: the integration of artificial intelligence into drug discovery and development processes. This alliance is part of an industry-wide movement towards leveraging AI to streamline R&D efforts, boost efficiency, and accelerate the time-to-market for new therapies. The competitive landscape for oral GLP-1 weight-loss drugs is heating up as Eli Lilly and Novo Nordisk vie for dominance. Monitoring prescription trends through advanced analytics tools provides insights into market dynamics, shaping future strategies for these companies. Proposed Medicare coverage for GLP-1 receptor agonists faced a setback with major insurers expressing hesitation to participate, which could affect access and affordability of these therapies used in managing type 2 diabetes and obesity. Meanwhile, Kyverna Therapeutics is making strides with CAR-T therapies for autoimmune diseases, presenting comprehensive data from its registrational trial of MIV-CEL for Stiff Person Syndrome. This could lead to the first FDA-approved CAR-T therapy in this domain, illustrating CAR-T's expanding applications beyond oncology and heralding a new era in personalized medicine approaches to autoimmune conditions. Samsung Biologics reports significant revenue growth amidst labor union challenges, highlighting its robust operational capabilities in biopharmaceutical manufacturing. This growth underscores the increasing demand for biologic drugs and the essential role of contract development and manufacturing organizations (CDMOs) in global supply chains. On the regulatory front, Novartis has faced setbacks with its anticoagulant Abelacimab after halting Phase 3 trials due to failure to outperform existing therapies like Eliquis. This highlights the inherent challenges in drug development where clinical efficacy must be clearly demonstrated. Meanwhile, ongoing discussions between regulatory bodies like the FDA and industry stakeholders are vital for aligning expectations with innovative R&D practices. The FDA has authorized clinical trials for ibogaine, a psychoactive substance with potential benefits in treating addiction and mental health disorders. This marks a pivotal moment in psychedelic research that could reshape treatment paradigms for neuropsychiatric conditions if safety standards are maintained. In vaccine news, Moderna has achieved European Union approval for its combination flu/COVID-19 vaccine—a significant stride given global pandemic preparedness efforts. However, its U.S. application remains stalled amid uncertainties about resubmission timelines. Eli Lilly's decision to exit its partnership with Rigel Pharmaceuticals reflects challenges in developing RIPK1 inhibitors for central nervous system disorders. This underscoreSupport the show

We welcome back Meredith Mangold to shift the conversation from the medical "odyssey" to the human connection. While the first part of Meredith's story (Episode 76) focused on her grueling search for a diagnosis and treatment for ulcerative colitis, POTS, and EDS, in this episode, we explore the essential, and often overlooked, role of support systems. Living with chronic pain at an "8 out of 10" for years isn't just a physical challenge; it's a relational one. Meredith joins hosts Cathy and Beth to discuss what it means to be truly supported when an illness doesn't have an end date. We dive into the nuances of communication, the "guilt of being too much," and the common mistakes well-meaning loved ones make when trying to "fix" a situation that can't be fixed. Whether you are navigating a chronic condition yourself or walking alongside someone who is, this episode offers a masterclass in empathy, validation, and the power of simply being believed.   Episode Topics: Survival vs. Support: Identifying the moments when external support became essential to Meredith's survival during her hardest years of chronic pain. The Anatomy of a Support System: What effective support looks like practically, emotionally, and through "quiet presence." Validation vs. "Fixing": Why well-meaning advice can sometimes feel harmful and how to pivot toward validation and safety. The Burden of Guilt: Navigating the fear of being "too much" for friends and family. Communicating the Invisible: Tips for articulating needs when pain is invisible and chronic. Advocacy without Burnout: How patients can ask for what they need without feeling ashamed. About the Guest: Meredith Mangold, CPXP, is the Founder of Empower Health Strategies and a Certified Patient Experience Professional. After being thrust into the healthcare system at age 20 with severe ulcerative colitis, later followed by diagnoses of POTS and Ehlers-Danlos Syndrome, Meredith dedicated her career to helping healthcare professionals and digital health innovators empathize with the patient journey. She serves on the board of the Chronic Pain Project, is a faculty member for the BiteLabs Fellowship, and collaborates with Johns Hopkins Hospital on patient advocacy initiatives. Resources & Links Mentioned: Meredith's Website: Empower Health Strategies Connect on LinkedIn: Meredith Mangold The Chronic Pain Project: chronicpainproject.org Read Meredith's Story: Emerging from the Fog (Johns Hopkins Medicine) The Chronic Illness Hotline: A text-based peer support line for those navigating chronic illness, pain, and disability. Support their mission or find help at chronicillnesshotline.org. Relevant It Happened To Me Podcast Episodes: #17 Mental Health Help with Social Worker Tamara Blum #25 Pancreatic Cancer with Patient Advocate Leslie Waldman #38 Dr. Tara Zier on Stiff Person Syndrome #66 Not Just Fatigue: Global Advocating for ME/CFS from Bed  #76 When Pain Never Stops: A Survivor's Story of Chronic Pain and Hope (Merdith's First Interview) #77 When Chronic Illness Changes the Tune: A Musician's Journey Through Diabetes and Stroke   Connect With Us:  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. 

The latest on the war with Iran as gas prices back home surpass $4 a gallon nationwide. Airport delays and long security lines ease as some TSA workers receive paychecks again. And, Céline Dion announces her long-awaited concert comeback four years after sharing her diagnosis with Stiff Person Syndrome. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Morse code transcription: vvv vvv Millions of drivers mis sold car finance to receive average 829 in compensation Scott Mills abrupt sacking creates another headache for the BBC Scott Mills sacked from BBC Radio 2 over personal conduct What was the 1970s oil crisis, and are we heading for something worse Palestinians convicted of deadly attacks face death penalty under new Israeli law Barbie Dream Fest in Florida to issue refunds after fan complaints Princesses Beatrice and Eugenie will not attend Easter church service Starmer gives doctors union 48 hour ultimatum on deal Celine Dion announces comeback shows four years after Stiff Person Syndrome diagnosis Dezi Freeman Porepunkah residents on hopes after manhunt ends

Morse code transcription: vvv vvv Scott Mills sacked from BBC Radio 2 over personal conduct Princesses Beatrice and Eugenie will not attend Easter church service Celine Dion announces comeback shows four years after Stiff Person Syndrome diagnosis Starmer gives doctors union 48 hour ultimatum on deal Palestinians convicted of deadly attacks face death penalty under new Israeli law Millions of drivers mis sold car finance to receive average 829 in compensation What was the 1970s oil crisis, and are we heading for something worse Barbie Dream Fest in Florida to issue refunds after fan complaints Scott Mills abrupt sacking creates another headache for the BBC Dezi Freeman Porepunkah residents on hopes after manhunt ends

Morse code transcription: vvv vvv Dezi Freeman Porepunkah residents on hopes after manhunt ends Barbie Dream Fest in Florida to issue refunds after fan complaints Millions of drivers mis sold car finance to receive average 829 in compensation Celine Dion announces comeback shows four years after Stiff Person Syndrome diagnosis What was the 1970s oil crisis, and are we heading for something worse Scott Mills abrupt sacking creates another headache for the BBC Starmer gives doctors union 48 hour ultimatum on deal Princesses Beatrice and Eugenie will not attend Easter church service Scott Mills sacked from BBC Radio 2 over personal conduct Palestinians convicted of deadly attacks face death penalty under new Israeli law

Morse code transcription: vvv vvv Scott Mills abrupt sacking creates another headache for the BBC Starmer gives doctors union 48 hour ultimatum on deal Dezi Freeman Porepunkah residents on hopes after manhunt ends Palestinians convicted of deadly attacks face death penalty under new Israeli law Millions of drivers mis sold car finance to receive average 829 in compensation Barbie Dream Fest in Florida to issue refunds after fan complaints Celine Dion announces comeback shows four years after Stiff Person Syndrome diagnosis What was the 1970s oil crisis, and are we heading for something worse Princesses Beatrice and Eugenie will not attend Easter church service Scott Mills sacked from BBC Radio 2 over personal conduct

It’s time to News It or Lose It! Today on Afternoons with Zweli, we’re covering the biggest headlines in pop culture. We address the tragic news regarding the passing of Prenell Rousseau, the individual who famously stalked Billie Eilish, and discuss how the media handles such sensitive celebrity security stories. On the lighter side, the Euphoria trailer is officially here, and with a five-year time jump, the stakes have never been higher for Rue and the gang, we’re breaking down everything you need to know ahead of the April 12 premiere. Finally, we’re celebrating the Queen of Power Ballads: Celine Dion has officially announced her comeback with a 10-show residency in Paris! After years of courageously battling Stiff Person Syndrome, the icon is set to take the stage again. Tune in as we decide: what’s grabbing the headlines today? Spend weekday afternoons with Zweli. He keeps you in the loop with everything from music and movies to sport and pop culture. Hear what the Word on the Street is, test your skills with the high-pressure 6 Out of 6, and get ready to be entertained. Thank you for listening to an Afternoons with Zweli podcast Listen live on Primedia+ weekdays from 12:00 to 15:00 (SA Time) to Afternoons with Zweli broadcast on 947 https://www.primediaplus.com/station/947 For more from the show go to https://buff.ly/FeeL6wY or find all the catch-up podcasts here https://buff.ly/pRBikjo Subscribe to the 947 Weekly Newsletter here https://buff.ly/hf9IuR9 Follow us on social media 947 on Facebook: https://www.facebook.com/947Joburg/ 947 on TikTok: https://www.tiktok.com/@947joburg 947 on Instagram: https://www.instagram.com/947joburg 947 on X https://x.com/947 947 on YouTube: https://www.youtube.com/@947Joburg See omnystudio.com/listener for privacy information.

I Am: Celine Dion   In a world dominated by constant pitching and fundraising, once in a long while, filmmakers get “The Call.” “The Call” is when a producer calls and asks if you are interested in a project, fully funded and with the main participant ready to go. Such was the case for Academy Award®-nominated director Irene Taylor (“Moonlight Sonata: Deafness in Three Movements”, “The Final Inch”) who received a call from a producer about the possibility of making what ultimately became Irene's exceptional portrait documentary “I Am: Celine Dion.”   Irene joins Ken on “Top Docs” to discuss how she was approached for the project and the surprisingly close collaborative relationship that she formed with Celine as the iconic singer faced up to the health crisis that forced her to stop performing. Suffering for over 15 years with a rare neurological disorder called  “Stiff Person Syndrome,” Celine kept her condition secret before revealing the diagnosis to fans in a video testimonial (captured in a meta moment by Irene's team). In our deep dive conversation, Irene talks about some of the emotionally wrenching scenes in the film, how Irene and her small crew practically embedded at Celine's house and the ultimate question for any filmmaker in her situation: “How the hell are we gonna deal with the “Titanic” song?”   “I Am: Celine Dion” is available for streaming on Prime Video.   Follow: @directorirenetaylor on Instagram @topdocspod on Instagram and X    “Top Docs” is now on YouTube!   Hidden Gem: “The Shepherd and the Bear”   The Presenting Sponsor of "Top Docs" is Netflix.

Send us a textGet ready for an inspiring conversation with Mary and Randy Latza! Hailing from Pennsburg, Pennsylvania, this power couple has an astonishing 32 Ultraman events under their belts either racing or crewing. They'll share invaluable lessons and heartwarming stories of the friendships they've built as part of "Rat Pack 2.0." But their racing doesn't stop there—Mary and Randy are also gearing up for the Ironman World Championships in Nice and Kona. Plus, Mary sheds light on Stiff Person Syndrome, a rare condition impacting her family, and how she's used events to raise awareness and funds. You can find more information and donation links at this website.  515 is Now on YouTube. Resources mentioned in this episode:DeSales University IM OttawaIM Lake PlacidIM St. George Ultraman FloridaIM New York CityIM Mont-TremblantIM LouisvilleIM SwitzerlandIM WacoStiff Person SyndromeUltraman World ChampionshipsIM NiceIM WisconsinFulGaz SpartanDeath RaceWinter DeathShout outs and mentions in this episode:Julie MossEric SuroSimon ShureySheryl Cobb (S2E6)Mark JonesTom RegalBilly Rickards (S7E1)Joan KimDede Greisbauer (S3E13) Leanda Cave  (S1E8)Billy EdwardsChris McCormack Cynthia Bartus Ryan TonerJeremy Howard (S2E8)Chuck KemenySteven Keller (S2E10)Jamie Harris  (S2E11)Jen Annett (S6E9)Armando Armelli  (S4E9)Support the showShow Contributors:Host : Larry RyanContributing Raconteur : Steve KingAnnouncer : Mary Jo DionneProduction : 5Five EnterprisesMusic : Run by 331 For show notes and past guests, please visit the Podcast Website: https://515theultrapodcast.buzzsprout.comFacebook: @515TheUltraPodcastInsta : @515theultrapodcastYoutube : @515TheUltraPodcastEmail : 515Ultraman@gmail.com

We are opening the Patreon vault to share our discussion of Amazon's 2024 documentary I Am: Celine Dion, which chronicles the singer's rise to fame, her prolific career, and her struggles with Stiff Person Syndrome. Here's Amazon's description of the film: Directed by Academy Award nominee Irene Taylor, I Am: Celine Dion gives us a raw and honest behind-the-scenes look at the iconic superstar's struggle with a life-altering illness. Serving as a love letter to her fans, this inspirational documentary highlights the music that has guided her life while also showcasing the resilience of the human spirit._ If you were wondering why Celine was not able to make an in-person appearance in Basel, this documentary does a fantastic job of explaining why that was the case. I Am: Celine Dion Summary What is I Am: Celine Dion about? (2:29) Who is this movie for? (9:38) Would you recommend this movie? (16:58) Subscribe The EuroWhat? Podcast is available wherever you get your podcasts. Find your podcast app to subscribe here (https://www.eurowhat.com/subscribe). Comments, questions, and episode topic suggestions are always welcome. You can shoot us an email (mailto:eurowhatpodcast@gmail.com) or reach out on Bluesky @eurowhat.bsky.social (https://bsky.app/profile/eurowhat.bsky.social). Join the EuroWhat AV Club! If you would like to help financially support the show, we are hosting the EuroWhat AV Club over on Patreon! We have a slew of bonus episodes with deep dives on Eurovision-adjacent topics.

In this podcast, our moderator Lillie Shockney is talking with Dr. Scott Newsome, director of the Johns Hopkins Stiff Person Syndrome Center.

Our moderator Lillie Shockney talks with Drs. Kate Thomas and Tammy Senn about the intimacy levels that change during a woman's lifetime.

Intermittent painful spasms, stiffness and rigidity of the proximal and truncal muscles are only a few symptoms of the relatively uncommon Stiff-person syndrome (SPS). In this podcast, we delve into the characteristics and diagnosis of this complex autoimmune condition. PN's podcast editor Dr. Amy Ross Russell interviews Professor Saiju Jacob (University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK). The paper is the Editor's Choice paper of the February issue of Practical Neurology. The episode is released to coincide with world Encephalitis day. For more information about World encephalitis day, or encephalitis international please follow this link: https://www.encephalitis.info/world-encephalitis-day/  Please subscribe to the Practical Neurology podcast on your favourite platform to get the latest podcast every month. If you enjoy our podcast, you can leave us a review or a comment on Apple Podcasts (https://apple.co/3vVPClm) or Spotify (https://spoti.fi/4baxjsQ). We'd love to hear your feedback on social media - @PracticalNeurol. Production by Letícia Amorim and Brian O'Toole. Editing by Brian O'Toole. Thank you for listening. 

Send us a textIn this episode of the podcast, Ricardo Karam meets Lea Jabre, the French-Lebanese advocate who turned her battle with the rare "Stiff Person Syndrome" into a message of hope and inspiration. Lea, who began her career in journalism and politics and further joined Ricardo Karam himself, chose to dedicate her life to humanitarian work and raise awareness about rare diseases.  After surviving a life-threatening health crisis, Lea emerged stronger, becoming a passionate advocate for patients and a fundraiser for research on Stiff Person Syndrome. She shares her journey of navigating physical challenges, emotional struggles, and societal perceptions, transforming her pain into a mission to change lives.  Join Ricardo Karam and Lea Jabre for an honest and moving conversation about resilience, purpose, and the hope for a brighter future.في هذه الحلقة من البودكاست، يلتقي ريكاردو كرم ليا جبر، الفرنسية اللبنانية التي حوّلت معاناتها مع "متلازمة الشخص الصلب" النادرة إلى رسالة أمل وإلهام. ليا، التي بدأت مسيرتها المهنية في الصحافة والسياسة لتعمل لاحقاً مع ريكاردو كرم نفسه، اختارت العمل الإنساني وتكريس حياتها لدعم المرضى والتوعية بالأمراض النادرة.  بعد أن نجت من صدمة صحية كادت تودي بحياتها، عادت ليا بقوة لتصبح مدافعة عن المرضى وجامعة تبرعات لأبحاث متلازمة الشخص الصلب. تروي ليا تفاصيل رحلتها بين التحديات الصحية والألم النفسي، وكيف اختارت تحويل هذه المعاناة إلى فرصة لتغيير حياة الآخرين.  انضموا إلى ريكاردو كرم وليا جبر في حوار صادق ومؤثر حول الألم، الإرادة، والأمل بمستقبل أفضل.

As 2024 comes to an end, we're taking a look back at some of the most meaningful TODAY moments from the year. Legendary singer and music icon Celine Dion sat down with Hoda Kotb for an NBC News Exclusive interview to discuss her life and health since being diagnosed with Stiff Person Syndrome, a rare autoimmune neurological disorder. Dion has spent the last several years uncharacteristically out of the spotlight, fighting for her life and her voice. Dion opens up about her health struggles, the impact SPS has had on her life and where she's finding hope.

This week, Deanna talks about Stiff Person Syndrome and Celine Dion's struggle with the condition (starts at (6:20)) at the end, we have things that are embarrassing for no reason! CHECK OUT our new merch store!  Please remember to subscribe and rate us/review us! Follow us on Instagram! Become a patron and support us via Patreon! Email us your f*cked up stories at NFWpodcast@gmail.com we'd love to hear from you! C U Next Tuesday!

Hoda Kotb's “Today Show” replacement revealed. ET with Craig Melvin moments after the announcement. Then, who will join Jenna Bush Hager for the fourth hour? Plus, how Jennifer Lopez powered through her first post-split performance. And, Celine Dion rules the runway while still battling Stiff Person Syndrome. Then, Cameron Diaz out of retirement. A first look at the film that brought her back and then got halted by Jamie Foxx's medical emergency. Plus, a sneak peek at Pamela Anderson's return to acting. And, only ET can take you to the set of Blake Shelton's new music video. Then, did a messy affair lead to a Real Housewife's divorce? Teddi Mellencamp breaks her silence. Plus, Kylie Richards on her ‘evolving sexuality' and how she really feels about ex Mauricio kissing someone else. And, our day at Disneyland continues with a look at the park's newest attraction.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Stiff person syndrome, like many rare diseases, does not get nearly the same amount of screen time or name recognition that other, more common diseases do. For many people, Celine Dion's announcement of her diagnosis with the condition in 2022 marked the first time they had heard of it. This limited awareness surrounding stiff person syndrome marks just one of the many challenges keeping this disease and other rare disorders in the dark. In this episode, we attempt to shed some light on stiff person syndrome, exploring the complex biology, frustrating history, and hopeful future of this disease. Because while the field of stiff person syndrome research faces many hurdles, there are also so many individuals - researchers, patients, advocates - and organizations that fight to bring this and other rare disorders into the light. Tune in today! Links: National Organization for Rare Diseases Genetic and Rare Diseases Information Center Johns Hopkins Stiff Person Syndrome Center Support this podcast by shopping our latest sponsor deals and promotions at this link: https://bit.ly/3WwtIAu Learn more about your ad choices. Visit megaphone.fm/adchoices

Dr. Ilea Khan has spent her life in constant pain. Though she may appear healthy on the outside, Khan suffers from the same rare disease as Celine Dion – stiff person syndrome. This week, she explains what it's like to live with an invisible illness and why advocacy and community is so crucial for people living with SPS. Learn More: https://radiohealthjournal.org/stiff-person-syndrome-dying-from-an-invisible-disease Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode of The Music in Me, I'm diving into the incredible world of one of my favorite singers—Celine Dion! I'll be taking you through eight of her most unforgettable songs, from the emotional powerhouse “All By Myself” to the uplifting anthem “I'm Alive.” I'll also share why these songs hold such a special place in my heart and how they've become timeless hits for so many.Along the way, I'll talk about Celine's inspiring resilience as she faces her health battle with Stiff-Person Syndrome, and how it's impacted her career and live performances. Plus, I'll chat about the I Am Celine Dion documentary on Amazon Prime and her amazing performance at the Olympics this year.And don't miss the “Interesting Fact of the Week” where I'll tell you all about how Celine first wowed an audience at just 5 years old! Whether you've been a fan of Celine for years or are just discovering her music, this episode is packed with fun stories, music insights, and a tribute to one of the greatest voices of all time. Tune in and join me in celebrating the magic of Celine Dion!SONGS MENTIONED...All By MyselfThe Prayer with Andrea BocelliTell him with Barbra StreisandMy Heart Will Go OnThe ReasonThat's The Way It IsI'm AliveBecause You Loved MeWhat did you think of this episode? Support the showKeep listening, keep grooving, and let the music in you continue to shine. Thank you, and see you soon!CONTACT TERI:Instagram: https://www.instagram.com/terirosborg/Facebook: https://www.facebook.com/teri.rosborgYouTube: The Music in MeTikTok: https://www.tiktok.com/@terirosborgPodcast Facebook Page: The Music in Me Podcast Facebook pageTHEME SONG BY: Hayley GremardINTRODUCTION BY: Gavin Bruno

Stiff Person Syndrome (SPS) is treatable if managed correctly from the outset. It is essential to distinguish SPS spectrum disorders from disease mimics to avoid both overdiagnoses and misdiagnoses. In this episode, Allison Weathers, MD, FAAN, speaks with Marinos C. Dalakas, MD, FAAN, author of the article “Stiff Person Syndrome and GAD Antibody–Spectrum Disorders,” in the Continuum® August 2024 Autoimmune Neurology issue. Dr. Weathers is a Continuum® Audio interviewer and associate chief medical information officer at the Cleveland Clinic in Cleveland, Ohio. Dr. Dalakas is a professor of neurology and director of the neuromuscular division at Thomas Jefferson University in Philadelphia, Pennsylvania; a professor of neurology and chief of the neuroimmunology unit and the National and Kapodistrian at the University of Athens in Athens, Greece. Additional Resources Read the article: Stiff Person Syndrome and GAD Antibody–Spectrum Disorders Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media @ContinuumAAN facebook.com/continuumcme Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology.  Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME.   Dr Weathers: This is Dr Allison Weathers. Today, I'm interviewing Dr Marinos Dalakas about his article on stiff-person syndrome and GAD antibody-spectrum disorders, which is part of the August 2024 Continuum issue on autoimmune neurology. Dr Dalakas is a world- renowned expert in neuromuscular diseases and, really, the first name any neurologist thinks of when they hear the diagnosis of stiff-person syndrome. Dr Dalakas, this is such an honor to be able to speak to you today. Welcome to the podcast, and would you please introduce yourself to our audience?   Dr Dalakas: Yes, thank you very much. I'm so happy to participate in this interview. I'm the Chief of the Neuromuscular Division at Thomas Jefferson University in Philadelphia, and I am interested in autoimmune neuromuscular diseases for many years and also on disease mechanisms and immunotherapy.   Dr Weathers: Thank you again for talking with me today. So, given how very rare stiff-person syndrome and the GAD antibody-spectrum disorders are, prior to December 2022, I would have started our time together by asking you to explain this collection of diagnoses to our listeners and by also talking about how often they occur. It feels like that's a bit unnecessary ever since Celine Dion went public with her diagnosis - that moment really changed the public awareness of what was previously outside of neurology and almost unheard-of disease. So, instead, I'll start with, what is the key message of your article? If our listeners are going to walk away remembering one thing from our discussion, what would you like it to be?   Dr Dalakas: Well, I think the publicity has been very good for the disease, this disease spectrum. On the other hand, there have been some misleading messages, like, it's extremely rare, it's untreatable, it's disabling – which, they are partially correct, so, my message is, first, to make sure the neurologists make the correct diagnosis, because there are a lot of diseases similar to stiff-person, but they are not stiff-person. So, to make sure the diagnosis is correct and to make the patients aware of what to expect when they have this disease and what therapies we have and what we may have in the future. So, the number one message is the correct diagnosis and then to avoid overdiagnosis or misdiagnosis, because now we see both - we see overdiagnosis and misdiagnosis.   Dr Weathers: I think that's such a critically important point, and one you really delve into really beautifully in the article, so I encourage our listeners who do have access to it to really read through it. As I said, you do a great job really explaining that - and, actually, to go into that further, could you explain how you approach the diagnosis of a patient with possible stiff-person syndrome or one of the other GAD antibody-spectrum disorders? And I know you probably get asked that on a daily basis. As I was telling you before we actually formally started recording, I remember back when I was a resident and saw my first case of a suspected patient with stiff-person syndrome, my mentor advised me to look up your case series, your articles at the time, and really use that to guide my diagnosis. What do you feel is the most challenging aspect of diagnosing a patient with one of these conditions?   Dr Dalakas: Well, the first is the clinical symptomatology. We say the patients present with spasms and stiffness, but also, there are phobias. They are very hyperexcitable to sudden stimulations, to sudden noises, to unexpected touches, and all of them can cause spasms, and then when you examine the patients, they have stiffness. Now, the stiffness (if there is a true stiffness) results in gait abnormalities (the patients are falling because they're so stiff), and also, the hyperexcitability causes a lot of anxiety and a lot of phobias (they're afraid to cross the street, they're afraid to make a destination promptly) – so, all these things are sort of suggestive of stiff-person. So, these are the symptoms that you hear, you listen, and you ask the patients, and then, when you examine the patient, you look for certain signs that there are, specifically, like stiffness of what we call agonist muscles and antagonist muscles, which means there is stiffness of the abdominal muscles and at the same time, stiffness of the back muscles - so, this concurrent stiffness of these opposing muscles is very specific, very characteristic of the stiff person, so if you see that, and then you listen to the history, you're very close to the diagnosis, and then you do the antibodies. And the antibodies (the specific antibodies, the GAD antibody), but it is specific as we say in the article, and we tried to make this very clear to the neurologists, that it's the high titers that matter, because low titers are not necessarily specific. So high titers of antibodies in the serum, above 10,000 by ELISA (or whatever method they use; but it has to be this many times above normal), and then if you have high serum titers and all the symptoms they mentioned, it is stiff-person. On the other hand, if the titers are low, then you may want to do a spinal tap to see if there is synthesis of antibodies in the spinal fluid. That helps you. Now if the GAD antibodies are negative, then you start wondering, is this seronegative SPS? And how do you confirm the seronegative SPS? You do electrophysiology, and the electrophysiology is, again, to see if there is activity (muscle activity) concurrently from the agonist and antagonist muscles - in other words, from the, let's say the tibialis anterior and the gastrocnemius (so, it's two opposing muscles, eg, biceps and triceps) - and if you see activity in both of these opposing muscle groups, and you see also hyperexcitability (you touch the patient, you stimulate just a little, and you see activity in other muscle groups). So, the electrophysiology is very important if the patient's antibody negative, but they have the other symptoms that I mentioned before.   Dr Weathers: I can imagine how challenging those must be (those seronegative cases) to try to really make sure you're identifying and carefully determining that you have the right disease as you alluded to at the beginning. I know how hard it must be for patients to want to at least have some answers to have a diagnosis.   Dr Dalakas: And this is the main thing today, because the publicity, as I mentioned, the beginning, increased the receipt of some information, so they overdiagnose it, like, “Oh, you have this and this and this, so it may be stiff-person”. And so, in fact, recently, we had a series of patients together with the Mayo Clinic Group of out of 173 patients referred to the Mayo Clinic for stiff-person – that's referred to them - only 28% had stiff-person. It's a low percentage, but it is an indication that the neurologists now refer patients to us for stiff-person, but we need to be very careful to correctly make a diagnosis.   Dr Weathers: On one hand, it's good that people are aware and considering the diagnosis, but it does highlight that risk of overdiagnosing.   Dr Dalakas: Yeah. It's the opposite of when I started this stiff-person syndrome (was close to 30 years ago at NIH) - at that time was underdiagnosed. This was the most rare disease, and I collected patients because at the NIH, I was also the Chief of the neuromuscular division there, and I was doing a study, so it was easy to collect patients (I collected more than 100 patients), but at that time, it was misdiagnosed. So, we had patients that I was seeing and they're really disabled, because they have been having the disease for many years, but they had been diagnosed either for Parkinson disease, for anxiety disorder, for psychiatric diseases, or for MS, or for myelopathies, or for myelitis - so many different things, and of course, they didn't have the correct diagnosis and they were disabled.   Dr Weathers: The side effect of having one of the most famous celebrities in the world having this rare disease - you know, the downside of the increased awareness, as we've said. So, moving on from the diagnosis to treatment - again, you do a, obviously, you know, an incredible job in the article, really going through the treatment options and your algorithms - what would you say is the most common misconception you've encountered in treating patients with this disease?   Dr Dalakas: The most common is now (with the publicity) is that it is a disabling disease. Well, it is disabling, but if you treat the disease correctly and early on, I'm not saying we're curing the disease - many diseases (autoimmune diseases), we help a lot, so there are some we make the patient feel normal, but the disease is there - so, if we start the correct therapy early, a good number of patients respond very well. But by the time the patients come to us, they are so stiff, they walk like a statue, or they come in a wheelchair - of course, it's difficult to reverse this, although we have been very happy to see patients with immunotherapies to get out of the wheelchair, to walk, to enjoy normal activities. So, we have made enough progress with the therapists to help a good number of patients. Now, what is the first therapy we do? Well, is what we call the antispasmodics - these are drugs that relax the stiffness that patients have, sort of a symptomatic therapy. It's not going to address the disease itself, but we address the symptoms. And of course, the symptomatic therapy in SPS is not just to relax the patients - it is related to the so-called GABAergic inhibition. So, the drugs that we use (like the benzodiazepines, or the baclofen, et cetera), these are the drugs that work on the GABAergic pathways. So, it is symptomatic therapy, but it works also on the mechanism, so it's not just a relaxing basis - but since the patients have a lot of phobias, the benzodiazepines also help the phobias. The anxiety and the phobias make the patients worse - they make them more stiff. And in the beginning, they go to psychiatrists because they are so phobic - they're phobic to walk. They hear something, they get so stiff. And I have patients coming at the National Airport in Washington to come to there needing aids in getting out of the plane - some of them get so stiff, they have to get an ambulance to come to the hospital because they're stiff everywhere. So, these phobias and anxiety have triggered a lot of my interest to the point of asking the investigators at the National Institute of Mental Health to see if there is any such thing like autoimmune phobias, because these patients have an autoimmune disease, so, well, maybe we can treat the phobias of immunology - well, we did not find anything, but I just sort of brought the idea maybe we have an autoimmune phobia. But on the other hand, when the patients get better, the phobias are reduced and they're more comfortable to walk. So, it's a very interesting complexity of the symptoms altogether.   Dr Weathers: That is – and, actually, that leads into my next question somewhat, that, as I mentioned in your introduction, you are the world expert in this rare disease. How did that happen? You talked about it a little bit just now. But how did you develop this particular interest and expertise? What drew you to this particular disease?   Dr Dalakas: Yes. It's interesting. I was interested in autoimmune neuromuscular diseases (many of them) and neuropathies and myopathies, and one day, I had a good friend of mine who was the clinical director of NINDS at that time, Dr Hallett. So, he saw patients in the movement disorder clinic and they had stiff-person (I don't know why they went to the movement disorder, but they went there), and Dr Hallett said, “Well, this is an autoimmune disease. You should work on this.” And then, I started seeing one or two patients, and I was very impressed. Really, the symptomatology is so interesting. The patients are suffering, and they sort of give the impression that they're neurotic. So, it's just a combination of when you listen to the symptoms, I was very impressed with the depth of the discomfort that they have and without seeing anything - but, when you examine the patient, you see the stiffness and nothing else. They're not weak, like, we see patients with MS, with myopathies, with neuropathies - they have weakness. They may use a cane, they may use two canes, they may use a walker, because they're stiff. So, it's a different disability than you see in patients who are weak. So, this really made me so interested to understand the mechanism - what's going on here - and that's the reason I started and I put the protocol. And then, we did a lot of immunological studies to understand the mechanism, electrophysiological studies to look at these agonist and antagonist muscles - and of course, we named it also. You know, in the beginning, the syndrome was described as stiff man (stiff-man syndrome), and they're all women. They are most of them, women. In fact, there is an article in a major journal, three women with stiff-man syndrome - and this was many years ago. So, stiff-person will be a more proper term. And then we're seeing a lot of patients or more women, but also we have enough men.   Dr Weathers: So, we've talked a lot about the change with this disease in public awareness. How has that changed your day-to-day life - has it (with the change in public awareness)? Are you bombarded with media requests?   Dr Dalakas: Well, it has stimulated me to write more about the disease and more articles, but also to highlight certain things that were not known before. For example, I had recently a paper on late-onset stiff-person. So, people, we see now patients who develop stiff-person at the age of seventy - they are above sixty or so, overall - and they have more severe disease. These patients also have not good tolerance to the medications we use - so, it's a more challenging group, so it is important to make the diagnosis even in patients with late-onset. These people do less well, because, first of all, they're all misdiagnosed, because if you're a little stiff at the age of sixty-five or seventy - well, you have a bad back, so you all have degenerative disc disease, so you don't think of stiff- person in that age. So, the stimulus was to identify some other issues with the stiff-person. The other is to think of new trials - and I have been working on two new trials. They're not out yet. I'm working to see how best to apply the new therapies. And also, it came up the idea of what are the best ways to assess, objectively, to assess the response, because this is an issue from the beginning. When I did controlled trials at the NIH, and we had established the so-called stiffness index to see how stiff they are measurably, but it is still subjective. It's not really objective, it's not (weakness to measure). So, we have gait analysis, we have the time to walk. So, I think establishing objective criterion to assess response to therapy, it's an important one - and so, I have been working on this how to make it more objective or as subjective as we can.   Dr Weathers: I think that's fantastic. And you actually, I think, have already answered my question - which is, what is the next breakthrough coming in the diagnosis and management of patients with stiff-person syndrome and the GAD antibody-spectrum disorders - and I think it's going to be the outcomes of these trials. Is there anything else that you're really excited about coming along in this field?   Dr Dalakas: Well, I think that the hope is, then, better immunotherapy, because the patients respond to IVIG based on the controlled study. We did one with anti-B-cell therapy - it was not statistically positive, but we had some placebo effects, because that second trial included some patients who did not have severe disease, so it was difficult to assess mild response. So, I'm interested in other similar immunotherapies, and we were approaching companies to see if they can sponsor such a trial. I think the publicity helps a lot, because if I was going to approach a company before the publicity, nobody would be interested in - there's no, you know - it's money-driven, so they will not do it. But at the NIH, I did it, because NIH had the grants there to sponsor the trials. So, I think the publicity will help us. And I know talking to companies, there are one or two companies that they have expressed a lot of interest, and, hopefully, we can do some new trials and go work on it, but I don't have any clear drug at the moment. I cannot discuss a real drug.   Dr Weathers: Of course, of course, more to come, but still very exciting. And so, still to learn more about you - again, you're so well known, obviously, for what you've done for the field of neurology. What do you like to do outside of seeing neuromuscular patients in your research career? What do you do for fun for your hobbies?   Dr Dalakas: Well, I have two hobbies. One is I'm an art collector of abstract expressionism. So, I go to a lot of auction houses, and I bid often for certain artists that I'm very interested, some French artists, some at the New York School of Modern Art. The eras of the forties and fifties of the abstract expressionism - so that's my collection and my interest in not missing auctions. And the other was I have a interest in wine collection – but, so, most of the time, I read art and I collect art.   Dr Weathers: That is a great answer. I appreciate art. I am not (fortunately) at the auction and collecting stage yet, but that I will have to learn from you. That's wonderful.   Dr Dalakas: Yeah. I'm originally from Greece, and I have also a professorship at the University of Athens, and also I go there. I also have some European artists in my collection.   Dr Weathers: That's wonderful. We have one more modern piece that we've been lucky enough to have.   Dr Dalakas: Yeah, I started with the impression impressionistic art, but I evolved into abstract.   Dr Weathers: Who is your favorite artist?   Dr Dalakas: Well, it's, you know, Rothko and Newman. So, these are very expensive artists, of course, so I can, but in that school, so these artists are not alive now, but people who are working with Rothko and Newman in the other group - so, there are four or five of them that I collect.   Dr Weathers: I feel like we need a whole separate interview just to talk about that.   Dr Dalakas: But, they are very stimulating, because the colors talk to you, and it's not like an impressionistic piece that, sort of, their flowers are nice, et cetera - so the colors talk to you differently.   Dr Weathers: They do. I love Rothko. Well, thank you, Dr Dalakas, for joining me on Continuum Audio. This has been a wonderful conversation. Again, today, I've been interviewing Dr Marinos Dalakas, whose article on stiff-person syndrome and GAD antibody-spectrum disorders appears in the most recent issue of Continuum on autoimmune neurology. Be sure to check out Continuum Audio episodes from this and other issues, and thank you to our listeners for joining us today.   Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at Continpub.com/AudioCME. Thank you for listening to Continuum Audio.

Today, this is what's important: Ear holes, Adam's health, asking questions, bunions, YouTube subscribers, the hottest athletes, working out, skin, Vincent D'Onofrio, Adventures In Babysitting, & more. See omnystudio.com/listener for privacy information.

Welcome to episode 186 of the Life Happens, Laugh Anyway podcast with comedian Tracy DeGraaf and her co-host Cathrine. In this episode, Tracy and Cathrine dive into the documentary "I Am: Celine Dion," available on Amazon Prime, which explores the renowned singer's journey with Stiff Person Syndrome, a rare and debilitating disorder. They provide an overview of the documentary, sharing insights into how this syndrome has affected Celine Dion's life and career. They also discuss other individuals who have faced similar challenges, losing their extraordinary gifts due to illness, and how they coped with these life-changing experiences. Tracy and Cathrine share their own personal stories of loss and resilience, offering encouragement and hope through scripture and a heartfelt call to action. Don't miss this touching and inspiring episode that celebrates the strength of the human spirit and the unwavering power of faith. P.S. Love the podcast? Become a Humor Contributor by donating $5 per month on Patreon. Your gift helps to offset the cost of bringing weekly episodes for your binging pleasure and personal growth. ;0)  P.P.S. Want to give a one-time gift of any amount? Do that here. Tracy and Cathrine are always dreaming and setting growth goals to reach more people with humor and truth. Adding video to the podcast is one of those lofty goals and it costs money to create a set, purchase equipment, and get training. Your gift of any amount will help in those efforts. Thank you so much.     

Céline Dion's Olympic performance came despite her struggle with stiff person syndrome. She's finding help, and hope, in Colorado. Then, lawmakers may try again to address high property taxes. Plus, Cherry Creek bucks the office vacancy rate. Also, the future of the historic Zuni power plant. And, what would your Olympic sport be? Finally, Ryan Tedder and OneRepublic premiere a new outdoor venue in Colorado Springs.

Céline Dion's Olympic performance came despite her struggle with stiff person syndrome. She's finding help, and hope, in Colorado. Then, lawmakers may try again to address high property taxes. Plus, Cherry Creek bucks the office vacancy rate. Also, the future of the historic Zuni power plant. And, what would your Olympic sport be? Finally, Ryan Tedder and OneRepublic premiere a new outdoor venue in Colorado Springs.

Olympics highlights and stiff person syndrome; Should I be concerned about my B12 being so high?; My calcium level is low. Should I be concerned?; Have you ever treated microscopic colitis patients with bismuth?; I'm taking Evening Primrose Oil but isn't it pro-inflammatory?

Maconomics Summit recap, I met Ryan Leslie, Earn Your Leisure, K Camp, Cortez Smith and so many other people! But before you ask.... I did not bring up Cassie or Diddy lol. Divorce In The Black, hear me out... Tyler Perry is footing a BIG ASS BILL for his black Hollywood. Simone Biles is back and ready to continue her reign, like shorty is a true OLYMPIAN. Her four-part Netflix series, is out now. The Céline Dion is a treasure of music we are forgetting about. Her documentary on Prime will have you thanking god for good health because why is "Stiff Person Syndrome" real? Why did I think it was made up...smh God forgive me... --- Support this podcast: https://podcasters.spotify.com/pod/show/robin-evette/support

Send Mary and Kelsey a Message!In this episode Mary and Kelsey share their top 3 favorite Celine Dion songs and the surprising stories behind them, like Meat Loaf's beef with Celine over It's All Coming Back To Me Now, how she hit that F5 in All By Myself, and more. Plus, the gals share their reactions to Celine's powerful new documentary, I Am: Celine Dion, which provides a gut wrenching look at her current struggles with rare neurological disorder called Stiff-Person Syndrome. Instagram: @whentheypoppedpodTikTok: @whentheypoppedEmail: whentheypoppedy2k@gmail.comWebsite: linktree.com/whentheypopped

It's all things Celine Dion! First, Chelsea welcomes Chris DeRosa (Fixing Famous People) to unpack the legendary singer's new documentary "I Am Celine" and explore insights into Celine's recent struggles with Stiff Person Syndrome and how it has affected her life and career. Then, we're bringing you a special re-release of our episode about Celine Dion's memoir, “My Story, My Dream,” with guest Stephanie Beatriz (“Brooklyn 99,” “In the Heights”). Learn about Celine's perspective on her rise to fame, the intricacies of her relationship with her manager and husband Rene, and more.The memoir episode begins at 24:06. Content warning: this episode contains discussions of sexual abuse. Take care while listening and find resources here. Where to order Chelsea's book: Bookshop.org Find other places to pre-order Follow Chelsea: Instagram @chelseadevantez Join the cookie community: Become a member of the Patreon Show Notes: 24:06 - Memoir episode begins Penny Marshall Episode Where to find our Guests: Chris DeRosa: Instagram Fixing Famous People Podcast Stephanie Beatriz: Instagram *** Thank you to our sponsors: Tanteo Tequila - @tanteotequila Pattern Brands - @patternbrands Libro.fm - Click here to get 2 audiobooks for the price of 1 with your first month of membership using code TRASH. A HUGE THANK YOU TO OUR TOUR PARTNERS THROUGHOUT THE TOUR: Lipgloss: @cheekbonebeauty Cocktails: @postmeridiemspirits Fans: @familyindustries Notebooks & pens:  @poketo @patternbrands  NEW YORK: Hotel: @staypineapple Books: @cafeconlibros_bk Cookies: @madbatternewyork Gift Bags: @thetravelagency.co Flowers: @flowersforall_bk DC: Hotel: @swannhouse Bookstore: @loyaltybooks Cookies: @unclechipscookies NASHVILLE:  Venue: @erinmurraycreates & @collective615 Bookstore: @novelettebooksellers Cocktails: @drinktipsy Desserts:  @myfavoriteplum @googooclusters @saturatedicecream @dandrewsbakery Gift Shop:  @tenngallonhat @gifthorsenashville Totes: @bagzdepot Photographer: @newviewmediaproductions  CHICAGO:  Venue: @thesecondcity Bookstore: @slantoflightbooks Photographer: @sandysteinbrecherphotography   NEW MEXICO Hotel: @eldoradohotelandspa *20% discount off of our Best Flexible Rate across all Heritage Hotels & Resorts properties to anyone who references promo code: COOKIESONLY through the summer Guests can call the reservations department and reference this promo code to enjoy these special rates or click the links found here. ABQ venue, planning & gifting: @newnuevonm Santa Fe venue & planning:  @sarahjonesabq @jeancocteaucinema @sfccnm @stagecoachfdn Bookstore: @beastlybooks418 Desserts:  @chaine_santafe @theturquoisemacaron.abq Permanent Jewelry: @linkxlou.albuquerque Henna: @MissHennaMarie Tarot: @readingsbykasandra Cheese Plates: @ the_bougie_brie Wine: @missionwinery Photographer: @gatheringsunshine SEATTLE: Hotel: @palladianhotel Venue: @shoptansysea Bookstore: @elliottbaybookco Cookies: @hellorobincookies Hair: @gwenythbeautybarber Permanent Jewelry:@linkxlou.seattle Totes: @bagzdepot Photographer: @katemillerphotography  PORTLAND: Hotel: @woodlark_hotel Use code CHELSEA for a discounted stay 20% off at The Woodlark Hotel for the Cookies! Venue: @sirentheatre Bookstore: @powellsbooks Cookies: @showstopper_cookies  Use code CHELSEA for 15% off your order  Photographer: @notnowjosh LA SPONSORS  Venues:  @shoptansyla @kisolosangeles Bookstore: @octavias_bookshelf Cookies: @uzziscookies Natural Wine: @itslulaseason Use COOKIESONLY code for $15 flat rate 3-day shipping on US orders thru July Tarot: @simonashapiro Totes: @my.awesomeprints Gifting: (essential oils) @properxchange (essential oils)  @pradosbeauty (lashes) @rustyschips (chips) @drinkghia (aperitif) @appalachianbotanicalco (lavender mist) @kindri_skincare (beauty oil) @popped.nyc (CBD body butter) @mpscandlestudio (custom candeles) @paperblanks (notebooks & bookmarks) Photographer & Videographer: @raemystic Photographer: @cowboymae

Subscribe to Mamamia One of the world's biggest superstars has let a film crew record some her most vulnerable moments and we can't stop talking about it. I Am: Celine Dion, reveals a raw insight into the singers life, living with an incredibly rare progressive autoimmune neurological disorder called stiff person syndrome. We discuss the details from the moving documentary and unpack Dion's motivation to share her most personal moments with the world. Plus, your weekly recommendations, which include an eye-opening podcast, something to do with three generations and the best kind of shopping - it's free.   And, a very messy Mia, a lesson never learned and Jessie's big Saturday night, it's our best and worst of the week. What To Listen To Next:  Listen to our latest episode: Jessie's Unexpected Therapy Dilemma Listen to Monday's episode: Is This All Jill Biden's Fault? Listen to Wednesday's episode: A Morality Checklist For Cheerleaders Listen: Every Thought We Had About 'America's Sweethearts: Dallas Cowboys Cheerleaders' Listen: Which Season Are You? The Colour Rules That Changed Our Wardrobes Listen: “Shut Up, You're Too Old”  Connect your subscription to Apple Podcasts  Sign up to the Mamamia Out Loud Newsletter for all our recommendations and behind-the-scenes content in one place.  Get $20 off for our birthday. Click here to get a yearly Mamamia subscription for just $49.  Want to try our new exercise app? Click here to start a seven-day free trial of MOVE by Mamamia  More From Mia, Holly & Jessie:  Listen to Mid: I Am Woman, Hear Me Giving No Shits Listen to No Filter: The Bromance The World Needs - Jimmy & Nath Listen to Cancelled: Katy "Feud With Taylor Swift" Perry What To Read:  Read Em Vernem's piece: What day of the week are you? Your answer reveals a lot about you. Read: A scene from Celine Dion's new documentary has fans in tears. Read: Inside Celine Dion and John Farnham's unexpected 6-year-long friendship. Read: One 'intense' moment in Céline Dion's doco was almost cut out. The singer fought to keep it in. GET IN TOUCH: Feedback? We're listening. Send us an email at outloud@mamamia.com.au Share your story, feedback, or dilemma! Send us a voice message Join our Facebook group Mamamia Outlouders to talk about the show. Follow us on Instagram @mamamiaoutloud CREDITS: Hosts: Holly Wainwright, Mia Freedman & Jessie Stephens Producer: Emeline Gazilas Assistant Producer: Tahli Blackman  Audio Production: Leah Porges Mamamia acknowledges the Traditional Owners of the Land we have recorded this podcast on, the Gadigal people of the Eora Nation. We pay our respects to their Elders past and present, and extend that respect to all Aboriginal and Torres Strait Islander cultures.Become a Mamamia subscriber: https://www.mamamia.com.au/subscribeSee omnystudio.com/listener for privacy information.

On this week's show, Dan Kois (author of Vintage Contemporaries and the upcoming Hampton Heights) and Laura Miller (Slate's books and culture columnist and author of The Magician's Book) fill in for Julia and Dana. The panel is first joined by Carl Wilson, Slate's music critic and the author of Let's Talk About Love, to parse through I Am: Celine Dion, a new documentary on Prime Video. Directed by Oscar-nominated director Irene Taylor, I Am: Celine Dion chronicles the French Canadian singer's private battle with Stiff Person Syndrome, an illness that has stripped away Dion's ability to sing – and with it, her identity. Then, the three explore A Family Affair, Netflix's wish fulfillment rom-com for middle-aged women starring Zac Efron, Joey King, and Nicole Kidman (plus a whole lot of Plasticine.) Finally, they dive into the world of aesthetics, inspired by Erin Schwartz's essay for The Cut, “In Defense of Calling Everything an Aesthetic.”  In the exclusive Slate Plus segment, the panel looks into “The Vexing Problem of the ‘Medium Friend'” by Lisa Miller for The New York Times.  Email us at culturefest@slate.com.  Endorsements: Dan: All Fours by Miranda July.  Laura: The Ministry of Time by Kaliane Bradley.  Stephen: “Art and Memory” by Julian Barnes for London Review of Books.  Podcast production by Jared Downing. Production assistance by Kat Hong.   Hosts Stephen Metcalf, Dan Kois, Laura Miller Learn more about your ad choices. Visit megaphone.fm/adchoices

On this week's show, Dan Kois (author of Vintage Contemporaries and the upcoming Hampton Heights) and Laura Miller (Slate's books and culture columnist and author of The Magician's Book) fill in for Julia and Dana. The panel is first joined by Carl Wilson, Slate's music critic and the author of Let's Talk About Love, to parse through I Am: Celine Dion, a new documentary on Prime Video. Directed by Oscar-nominated director Irene Taylor, I Am: Celine Dion chronicles the French Canadian singer's private battle with Stiff Person Syndrome, an illness that has stripped away Dion's ability to sing – and with it, her identity. Then, the three explore A Family Affair, Netflix's wish fulfillment rom-com for middle-aged women starring Zac Efron, Joey King, and Nicole Kidman (plus a whole lot of Plasticine.) Finally, they dive into the world of aesthetics, inspired by Erin Schwartz's essay for The Cut, “In Defense of Calling Everything an Aesthetic.”  In the exclusive Slate Plus segment, the panel looks into “The Vexing Problem of the ‘Medium Friend'” by Lisa Miller for The New York Times.  Email us at culturefest@slate.com.  Endorsements: Dan: All Fours by Miranda July.  Laura: The Ministry of Time by Kaliane Bradley.  Stephen: “Art and Memory” by Julian Barnes for London Review of Books.  Podcast production by Jared Downing. Production assistance by Kat Hong.   Hosts Stephen Metcalf, Dan Kois, Laura Miller Learn more about your ad choices. Visit megaphone.fm/adchoices

In the documentary "I Am: Celine Dion", Celine suffers a painful, 10-minute seizure to show what it's like to live with Stiff Person Syndrome. See omnystudio.com/listener for privacy information.

Moe Diggs is a journalist, cultural commentator, and podcaster. She joins Simone and Danielle to dive into the juiciest pop culture moments of the week, from dissecting the Tony Awards, to Usher's latest fasting routine, to Ariana Grande's recent album. And they debate the best rom-com movies of all time.See omnystudio.com/listener for privacy information.

In this enlightening episode of It Happened To Me, we are joined by Dr. Tara Zier, founder of the Stiff Person Syndrome Research Foundation. Dr. Zier shares her personal journey with Stiff Person Syndrome (SPS), a rare and debilitating autoimmune disorder, and discusses her mission to advance research, treatments, and awareness for this condition. Introduction: Dr. Tara Zier, founder of the Stiff Person Syndrome Research Foundation Background on Stiff Person Syndrome: a rare autoimmune disorder characterized by muscle stiffness and painful spasms Key Discussion Points: Understanding Stiff Person Syndrome: Description and symptoms of SPS Impact on daily life for those affected Dr. Zier's Journey: Her personal experience with SPS and the path to diagnosis The challenges faced and the resilience shown Managing Symptoms: Current medications and therapies including muscle relaxers, infusions, plasma exchange, physical therapy, and more Medications and treatments to avoid for SPS patients Foundation's Mission and Goals: The establishment of the Stiff Person Syndrome Research Foundation Aims to fund research, develop treatments, and find a cure Collaborations and Achievements: Partnerships with the Stiff Person Syndrome Center at Johns Hopkins and the Mayo Clinic Contributions to the global patient community Insights into Research and Treatments: Current state of SPS research and available treatments The importance of raising awareness and public understanding Role of Patient Communities: The significance of patient communities in advancing research and providing support How the foundation fosters connections with patients worldwide Support Beyond Fundraising: Additional ways the foundation aids individuals and families affected by SPS Advice for Aspiring Advocates: Encouragement and guidance for those looking to establish foundations or support medical research for rare diseases Personal Reflections: Stories and experiences from the SPS community that have touched Dr. Zier Dr. Zier's personal strategies for maintaining mental health amidst her advocacy work Future Aspirations: Hopes and aspirations for the future of the Stiff Person Syndrome Research Foundation Vision for the field of SPS research and treatment Closing Remarks: Dr. Zier's final thoughts and gratitude for the opportunity to share her journey Encouragement for listeners to support SPS research and awareness initiatives Episode Links: Stiff Person Syndrome Research Foundation Follow Dr. Tara Zier on Twitter 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. 

Céline Dion has been quietly battling Stiff Person Syndrome - a disorder that's affected her ability to sing - since revealing the diagnosis in 2022. But this week, she sat down for a very candid interview with NBC's Hoda Kotb, in which she opened up about her intense struggle with SPS, her upcoming documentary, “I Am: Céline Dion,” and whether she'll ever sing live again. There's no denying she's got a tough road ahead of her, but Céline is proving she's a fighter. And she's got the heart to go on.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Céline Dion has been quietly battling Stiff Person Syndrome - a disorder that's affected her ability to sing - since revealing the diagnosis in 2022. But this week, she sat down for a very candid interview with NBC's Hoda Kotb, in which she opened up about her intense struggle with SPS, her upcoming documentary, “I Am: Céline Dion,” and whether she'll ever sing live again. There's no denying she's got a tough road ahead of her, but Céline is proving she's a fighter. And she's got the heart to go on.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Legendary singer and music icon Celine Dion sat down with Hoda Kotb for an NBC News Exclusive interview to discuss her life and health since being diagnosed with Stiff Person Syndrome, a rare autoimmune neurological disorder. Dion began quietly experiencing mysterious symptoms affecting her body and her voice, and after more than a decade of testing and treatment, was diagnosed with SPS. Fearful she may never return to the stage, or to her beloved fans, Dion has spent the last several years uncharacteristically out of the spotlight, fighting for her life and her voice. Dion opens up about her health struggles, the impact SPS has had on her life and where she's finding hope.

Hoda sits down with Celine Dion as she discusses her diagnosis of Stiff Person Syndrome and how she's finding hope amid her health battle. Also, Will Ferrell discusses “Despicable Me 4” and plays a fun game of “Fact or Fake” with Hoda and Jenna. Plus, a few of this year's biggest décor trends to take your wedding to the next level.  

On the new Greg Cote Show: We discuss the agony of Panthers' 5-4 OT home playoff loss. Plus Bark Air, Stiff Person Syndrome, Dwyane Wade, Stan Van Gundy, neighbor Shelly and more. Learn more about your ad choices. Visit megaphone.fm/adchoices

On the new Greg Cote Show: We discuss the agony of Panthers' 5-4 OT home playoff loss. Plus Bark Air, Stiff Person Syndrome, Dwyane Wade, Stan Van Gundy, neighbor Shelly and more. Learn more about your ad choices. Visit megaphone.fm/adchoices

Drake's dick, Stiff person syndrome, the Grammys, female R&B singers, nepo babies, pretty privilege, Rumpelstiltskin, & more.See omnystudio.com/listener for privacy information.

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