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/

In this episode of the podcast we speak to Steve Smith, a patient advocate who is living with Pulmonary Arterial Hypertension (PAH), a rare and progressive condition characterized by narrowing of the blood vessels in the heart and lungs. Steve is a college administrator and avid theater participant who uses his PAH story to connect with others, believing that open communication is key to the patient experience.   Hear More About Steve and Other PAH patients: OutnumberPAH.com   Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: getinvolved.patientworthy.com Outnumber PAH | Living With Pulmonary Arterial Hypertension Together we can outnumber PAH. Find resources for living with pulmonary arterial hypertension and learn from the stories of people in the PAH community.  

In this episode of the podcast we speak to Ashley Point, a patient advocate advocate whose son Davis was diagnosed with Koolen de-Vries Syndrome (KdVS) in 2016. She also serves as the president for both the Koolen de-Vries Syndrome Foundation and My Kool Brother, two non-profits that help to support families living with KdVS through advocacy, research and fundraising. Connect with Ashley Point: Koolen de-Vries Syndrome Foundation - My Kool Brother - "Davis Out of the Unknown" Documentary - Donate Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: getinvolved.patientworthy.com

In this episode of the podcast we speak to Valen Keefer, a professional speaker and patient advocate who was diagnosed with polycystic kidney disease (PKD) at age 10. Valen has faced a number of challenges in her journey, including a double organ transplant, and now inspires other PKD and chronic illness patients by sharing her story.  Connect with Valen Keefer: Website - Podcast -  Facebook - Instagram - X - LinkedIn Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

In this episode of the podcast, we speak to professional speaker and community advocate Keisha Hickson, who was diagnosed with multiple myeloma in 2016. That’s a rare form of cancer that develops in a type of white blood cell called a plasma cell. We discuss navigating a rare cancer diagnosis, adjusting to a new normal and the importance of resiliency. Connect with Keisha Hickson: Website - Instagram - LinkedIn Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

This episode's guests include Dr. Tracy Dixon-Salazar, Executive Director for the Lennox-Gastaut Syndrome (LGS) Foundation, as well as Meg Alexander, Chief Strategy Officer of Ovid Therapeutics. We discuss the treatment landscape for seizure disorders such as LGS and why further research and investment is crucial. Connect with the LGS Foundation: Website - Facebook - X (Twitter) - YouTube - Instagram - LinkedIn Connect with Ovid Therapeutics:  Website - LinkedIn - X (Twitter) - Facebook Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

In this episode of the podcast we sit down with Brandi Benson, a U.S. army veteran, author and patient advocate who was diagnosed with Ewing sarcoma in 2008. That’s one of rare family of cancers that develop in bones and the surrounding soft tissues. Brandi shares her story of resilience and survivorship, hoping to inspire others to share their cancer stories story as well.  Connect with Brandi: Website - Facebook - Instagram - YouTube - LinkedIn Check out Survivorship Today to hear the stories of other cancer survivors like Brandi. Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

In this episode of the podcast we sit down with Kari Rosbeck, the president and CEO of the TSC Alliance. That’s a nonprofit dedicated to supporting people living with tuberous sclerosis complex and also driving research into promising treatment, among many other things. The TSC Alliance is also celebrating its 50th anniversary this year! Connect with the TSC Alliance: Website - Facebook - Instagram - YouTube - TikTok - LinkedIn - Threads - Inspire Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

In this episode of the podcast we sit down with Ronda Thorington, the mother of child living with mixed connective tissue disease. Ronda is also a licensed professional counselor who specializes in empowering parents of children who are living with a rare or chronic diagnosis. Connect with Ronda: Website - Facebook - Instagram Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

In this episode of the podcast we sit down with Murray Walz, a patient advocate who was diagnosed with the progressive lung diseases idiopathic pulmonary fibrosis (IPF) in 2019. Murray discusses the importance of support, clinical trials and why the family factor is crucial for IPF patients. Connect with the Canadian Pulmonary Fibrosis Foundation: Website - Facebook - Instagram - X (Twitter) - YouTube Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

In this episode of the podcast we talk with Jennifer Angus, a patient advocate and para dressage competitor who was diagnosed with multiple sclerosis in 2014. Jennifer has long been involved with athletics having a history as a skiing instructor and is a big advocate of horseback riding as a way to heal the body and mind. Connect with Jennifer Regarding MS: Website - Instagram - Facebook - X (Twitter) - YouTube Connect with Jennifer Regarding Para Dressage: Instagram Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

In this episode of the podcast we talk with Drs. Julie Gerberding and Courtney Silverthorn from the Foundation for the National Institutes of Health (FNIH). They're bringing us updates on the Bespoke Gene Therapy Consortium's new regulatory playbook that is designed to help get certain types of genetic therapies for rare diseases approved and available to patients more quickly. We're also joined by Sharon King, the Co-Founder of Taylor's Tale a non-profit that advocates on behalf of rare disease patients. She talks about why timely development of gene therapies is so important for people like her daughter, who lived with CLN1 disease. Learn more about the FNIH and the BGTC Regulatory Playbook here. Learn more about Taylor's Tale and the ways there are helping rare disease patients here.  Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

In this episode of the podcast we talk with Kristina Robinson, a patient advocate and mother whose son, Axel, was diagnosed with hemophilia A when he was 10 months old. That’s a rare bleeding disorder, sometimes called “classic hemophilia,” that is characterized by excessive bleeding from cuts, unexplained bruising, joint swelling and more. Since her son was diagnosed, Kristina has been his #1 champion, advocating for hemophilia awareness in her home state and beyond. Keep up with Kristina and Axel on Instagram! Learn more about hemophilia and ways that you can get involved at the New England Hemophilia Association! Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

This episode features Kecia Johnson, an author, music industry veteran and motivational speaker who was diagnosed with HIV/AIDS in her early 20s, and also with a rare form of stage-3 colorectal cancer at age 35. Kecia has been an outspoken patient advocate who has appeared in OutSmart Magazine, Shoutout Atlanta, many different podcasts and also a Walgreen’s ad campaign. Keep up with Kecia: https://linktr.ee/KeciaJ Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02

In this episode of the podcast, we speak with Tony Laudadio, an oncology patient advocate who was diagnosed with renal cell carcinoma and oligodendroglioma, a type of rare brain cancer. In the years after his remission, Tony also started the Tony Foundation, a non-profit that helps to support families impacted by all types of cancers with crucial financial aid. Topics Discussed: The importance of a support system, acute diagnoses and financial burden, and more! If you'd like to learn more about the Tony Foundation and the ways in which they are supporting cancer patients, check out their website here. Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a oncology journey to share, reach out here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.

In this episode, we speak with Dr. Emil Kakkis, a physician and scientist who has spent more than 30 years helping to advance research, treatment and policy for rare disease patients. He is also the founder of both the EveryLife Foundation for Rare Diseases and Ultragenyx, a life sciences company dedicated to developing innovative treatments for rare and ultra-rare diseases. Topics discussed: advanced tech and the promise it holds, the key factors in advancing rare therapies, issues standing in the way of treatment access and more. If you'd like to pick up a copy of Dr. Kakkis' book, you can find it at Impositivity Media or at Amazon. You can learn more about Rare Disease Week here. Editor’s Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have an aHUS journey to share or want to connect with others about chronic illness, reach out here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.