Shows
I'm Dying to Tell YouElin Adcock - Her Journey Facing ALS and FTD TogetherHere, Elin Adcock shares her powerful journey through her husband’s ALS and frontotemporal dementia (FTD) diagnoses—and how she’s now leading the charge to support families facing the same fight. When Elin's husband, Larry was diagnosed with both ALS and FTD, her world changed forever. In this episode, Elin shares how she navigated the overwhelming challenges of caregiving through two devastating and progressive diseases—often without a clear roadmap or coordinated support. After her husband’s passing, Elin turned her grief into action, becoming a fierce advocate for families facing similar dual diagnoses. Her story is one of love, res...2025-05-0649 minI'm Dying to Tell YouQuestions About ALS? There's an App for That: Roon!When faced with an ALS diagnosis, finding trustworthy information shouldn't add to your burden. This episode introduces a groundbreaking solution born from one son's love for his father.Vikram Bhaskaran takes us through the painful journey that sparked innovation – watching his father battle ALS in India while struggling to access reliable information and expertise. The stark contrast between his Silicon Valley tech job, where brilliant minds created seamless user experiences, and the "dark ages" of health information access, drove him to action. The result? ROON.Roon addresses the three dimensions of living with ALS – medical know...2025-04-0250 minI'm Dying to Tell YouCarrying an ALS Gene: Mindy Uhrlaub’s Story of Hope & ActionWhat happens when you learn that your DNA carries the same mutation that led to a loved one’s battle with ALS? In this episode, I sit down with Mindy Uhrlaub, who discovered she is a carrier of the C9orf72 gene—the most common genetic cause of ALS and Frontotemporal Dementia. Mindy shares her emotional journey of genetic testing, the weight of living in the unknown and the unique challenges that come with being pre-symptomatic.We dive into the mental and emotional impact of her hereditary disease, the stigma surrounding genetic conditions, and how humor, advocacy and...2025-03-0549 minI'm Dying to Tell YouI AM ALS Turns 6: Community Teams Inspiring ChangeWelcome to "I'm Dying to Tell You," where we shine a light on resilience and hope. In this special episode, we’re celebrating six years of I AM ALS, an organization created for patients, by patients.Why is this so important? Because for far too long, those most impacted by ALS weren’t leading the charge in our collective mission for a cure. But I AM ALS changed the game. By putting patients at the forefront, they are not only better equipped to serve the ALS community, but we’re operating on the ALS clock—pushing for accelerat...2025-01-281h 06I'm Dying to Tell YouFashion, HOPE, ALS Reversals: All with Dr. Richard BedlackHere I chat with Dr. Richard Bedlack, a neurologist known not only for his relentless ALS research but also for his unique style. This episode unfolds the fascinating story of how an encounter with legendary designer Manuel Cuevas led to the creation of a special jacket that embodies Dr. Bedlack's fight against ALS. We also celebrate the powerful alliances formed through advocacy, as highlighted by a heartfelt recognition from Zac Brown Band's John Driskell Hopkins. I loved hearing him talk about how fashion, music and medicine are all playing a part in the battle against ALS.For 24...2025-01-151h 03I'm Dying to Tell YouFacing ALS with Resilience: Johnny Rodriguez's Inspiring JourneyImagine facing a life-changing ALS diagnosis and tackling it with resilience and positivity. That’s what Johnny Rodriguez, a 35-year-old high school lacrosse coach, husband, and father, has done. Johnny’s story is one of inspiration, determination, and the power of community. From playing lacrosse in Hawaii to mentoring athletes at Mater Dei High School in Santa Ana, California, he pushes the boundaries of what’s possible with ALS.Johnny’s support network and the lacrosse community have been vital in fueling his fight. As a coach, he not only develops athletes but also teaches life skills and resi...2024-12-1254 minI'm Dying to Tell You"Clayton Rakes" - Two Siblings’ Mission to Honor Their Dad and Fight ALSWhat if two young siblings could inspire an entire community to rally against a devastating disease? Brady and Brooklyn Yozwiak from Hudson, Ohio, are doing just that with their initiative, Clayton Rakes. Their story begins with a deeply personal journey, motivated by their father Chris's battle with ALS. Sadly, Chris passed away in early 2024, but these incredible kids, aged just 11 and 8, have turned their grief into action by raising substantial funds for ALS research through their leaf-cleaning enterprise. Tune in to learn how their heartfelt mission is making waves, proving that age is no barrier to making a significant...2024-11-2537 minI'm Dying to Tell YouEpisode 100: A Chat with 100-Year-Old Mildred KirschenbaumTo celebrate Episode 100 of this podcast, here I chat with 100-year-old Mildred Kirschenbaum. Mildred has become a social media star and is happily sharing some life lessons of her ten decades. She not only became an author at 100, Mildred entertains over 100,000 on TikTok and Instagram. Her videos have been featured on mainstream media outlets like the Today Show, CBS and Fox. Mildred and her daghter Gayle collaborated on a book, Mildred’s Mindset: Wisdom from a Woman Centenarian, a 76-page self-published book that melds anecdotes, photos, and life advice. In Mildred's book, readers embark on a journey through the extraor...2024-10-0143 minI'm Dying to Tell YouBroadway's Aaron Lazar on Making the Impossible, Possible ... Even with ALSIn this conversation, Aaron Lazar shares how he discovered a new life purpose after being diagnosed with a terminal illness, ALS. Aaron has been in the spotlight for over two decades in his successful career as a singer, actor and now speaker and advocate. Aaron took a couple years before going public with his ALS in order to discover how he would shape and control his future. As a result, Aaron is currently rebuilding his life to achieve his new impossible dream which is healing in face of unspeakable adversity. Here, Aaron talks about his perspective on the importance of a...2024-09-111h 00I'm Dying to Tell YouZac Brown Band's John Driskell Hopkins: An Update on ALS, Life and MusicGrateful to catch up with John Driskell Hopkins (Hop) again to see how he’s doing with his ALS diagnosis. About 2.5 years after being told he had ALS, John continues to perform with the Zac Brown Band. Despite seeing some progression of the disease, Hop is living a full and joyful life. He's busy creating new music, being a family man and promoting Hop On A Cure, the foundation he & his wife, Jennifer started to accelerate ALS research. Hop shares how ALS is affecting him & what it’s like living out this journey in the public eye. He updates us on his...2024-08-061h 01I'm Dying to Tell YouGoode and Faithful Servant: A Chat with Kerry GoodeSo grateful to have this conversation with Kerry Goode, former NFL (National Football League) player who was diagnosed with ALS in 2015. Kerry was a running back at the University of Alabama, Tampa Bay Buccaneers, Miami Dolphins and later a strength and conditioning coach also in the NFL. So he knew something was wrong when he couldn’t pick up a box. Here, Kerry shares what he's feeling about having been so physically strong, being able to bench press 400 pounds & squat 800 pounds to now not even being able to pick up a pencil. He lets us know how he's able to ma...2024-07-1031 minI'm Dying to Tell YouCould it be ALS? - Bob Scannell on ALS MisdiagnosisIn this episode, I sit down with ALS advocate Bob Scannell, whose personal journey through his wife's battle with ALS has fueled his mission to raise awareness about the disease. After enduring a series of misdiagnoses before finally receiving an ALS diagnosis, Bob is now at the forefront of a campaign to educate both the healthcare industry and the public on the critical importance of early and accurate ALS diagnosis. Join us as Bob shares his powerful story and discusses the urgent need for improved ALS awareness and diagnostic practices. Thank you for listening in. Hugs, Lorri...2024-06-1143 minI'm Dying to Tell You“Staying Loudly” - Sam’s Positive Mindset with ALSIn this compelling podcast episode, I delve into an inspiring conversation with Sam Telgkamp, a resilient 27-year-old battling ALS. Despite her inability to speak due to the progressive nature of the disease, we explore her journey and outlook on life with grace and gratitude at the forefront. Sam's unwavering positivity and resilience shine through as she discusses the challenges of living with a terminal illness, navigating her speech device solely with her eyes. Her perspective offers a poignant reminder of the power of perspective and the resilience of the human spirit in the face of adversity. Sam shares her heart & e...2024-05-0755 minI'm Dying to Tell You37-year-old Sara Bennett: Life, Death & Parenting with ALSIn this episode of ""I'm Dying To Tell You,"" I meet up with the resilient Sara Bennett, from Columbus, Ohio. At just 36 years old, Sara was confronted with a devastating diagnosis: ALS. In a candid and deeply moving conversation, Sara opens up about her extraordinary journey, bravely navigating the intricate balance of life as a mother to two young sons, aged 5 and 7, while grappling with the harsh reality of a terminal illness. With unwavering courage, Sara shares her poignant insights, offering listeners a profound glimpse into the resilience of the human spirit in the face of unimaginable challenges. Sara shar...2024-04-1753 min