Wait, How Do You Spell That? A Rare Disease Podcast

Join host Bree Clare as she speaks with Dr. Charles Link, a pioneering oncologist and immunotherapy researcher who's spent decades reshaping the landscape of cancer medicine.  In this episode, Dr. Link breaks down SYNC-T, a revolutionary in-situ immunotherapy platform that's redefining treatment possibilities for hard-to-treat cancers. We'll explore how this multi-target immunotherapy works to educate the immune system to recognize and attack cancer and learn about an exciting Phase 2 clinical trial now enrolling patients with Metastatic Castration-Resistant Prostate Cancer (mCRPC). Whether you're a patient, caregiver, researcher, or simply seeking hope and inspiration at the frontiers of medicine, this conversation offers a rare glimpse into decades of clinical innovation and the relentless pursuit of better outcomes for cancer patients everywhere. Listen now for hope, science, and the future of cancer treatment. And to learn more about Syncromune please visit: Syncromune — Now Enrolling LEGION-100 Trial for mCRPC or the LEGION-100 trial at LEGION-100 Clinical Trial | mCRPC Prostate Cancer | Syncromune

This podcast episode is sponsored by AVEO Oncology.  The product information in this podcast is intended only for US residents.  This episode features a real patient and their care partner, highlighting their experiences with a treatment option for advanced kidney cancer.  Please note that the patient’s experience is their own and individual results may vary.  This podcast is not intended as medical advice.  Only a doctor can decide what medications may be appropriate for you.  The patient and the caregiver were paid for their time and expenses.        I’m honored to welcome Scott and Katie to the program. Scott’s journey began when he started experiencing symptoms that ultimately led to a diagnosis of renal cell carcinoma, resulting in the removal of his right kidney. At first, no additional treatments were needed. But eventually, after a biopsy of a lesion in his lung, Scott learned that his cancer had returned as stage IV metastatic renal cell carcinoma. Today, we’re joined by Scott and his wife Katie, who share their journey with advanced renal cell carcinoma – the challenges they’ve faced, the lessons they’ve learned, and the support they’ve discovered along the way. Their story is not only about facing a difficult diagnosis, but also about the strength of partnership, perseverance, and hope.     Through their experience, Scott and Katie remind us that no one has to face kidney cancer alone—there’s a community of understanding and shared strength every step of the way. Whether you’re a patient, a care partner, or simply someone seeking hope and information, we believe you’ll find inspiration and connection in Scott and Katie’s story.     

On today’s episode of ‘Wait, How Do You Spell That? A Rare Disease podcast brought to you by Patient Worthy. We are thrilled to share with you a story that is as powerful as it is inspiring. Our guest today is Lisa Batista, author of the newly released memoir, "Falling: A Journey of Strength, Survival and Rising," which is now available on Amazon, Barnes & Noble, and through her website, labatista.com.Lisa grew up in Brooklyn, New York, where she navigated the challenges of a walking world while living with Spinal Muscular Atrophy, or SMA. SMA is a rare, genetic disorder that is categorized as weakness and disintegration of muscles due to the loss of neurons in the spinal cord that affects the control of muscle moment and gradually causes increased weakness and loss of muscle function.In her book, Lisa shares her extraordinary journey—one marked not only by the physical realities of SMA, but also by the misunderstandings she faced from those around her. Often dismissed or accused of laziness, Lisa endured a life shaped by both her diagnosis and the abuse and misfortune that came with not being believed. Despite her muscles growing weaker, Lisa found a path to strength and survival, ultimately rising above the obstacles she faced.Today, we’ll dive into Lisa’s story—her struggles, her resilience, and what she hopes readers will take away from her memoir. So, sit back, get comfortable, and join us for a conversation about courage, perseverance, and the power of being seen and heard. To find your copy of Lisa's book: Amazon - Amazon.com : falling a journey of strength Barnes & Noble - falling: the journey of strength, survival and rising | Barnes & Noble® Lisa's Website - Falling - A Journey of Strength, Survival and Rising To learn more about Patient Worthy and how you can be a guest on Wait, How Do You Spell That? please visit our website at PatientWorthy.com   

Patient Worthy is humbled to speak to Brenda Snow, CEO and Founder of Snow Companies and now the bestselling author of 'Diagnosed: The Essential Guide to Navigating the Patient's Journey'. We discuss Brenda's own journey with Multiple Sclerosis and how she has turned it into a career and guidebook for others facing chronic diagnoses. You can find Brenda's book now at Amazon.com or by going here: Amazon.com : brenda snow book diagnosed And to watch the full interview with Brenda, please visit our YouTube channel here: Wait, How Do You Spell That? - "Diagnosed: The Essential Guide to Navigating the Patient Journey"

On this episode of the podcast, we discuss the role of artificial intelligence (AI) in medicine – specifically in the areas of analysis and diagnosis. Our guest, Dr. Joe Lennerz, is the chief scientific officer at BostonGene, an American clinical technology company that studies and produces new diagnostic tools in the areas of oncology and immunology.   https://bostongene.com/