In this Happy Hour Chat, I talk with Tina Cascio, Mira Hudson and Kelly McGinn, all young women who share their journey living with ALS after being diagnosed in their 20's and 30's. John Driskell Hopkins of Zac Brown Band who is also battling ALS joins the conversation too. We discuss finding community, maintaining independence, and embracing joy despite a terminal diagnosis. Tina has familial ALS with the SOD1 mutation and has been living with it for nearly five years. Kell...
This episode follows the powerful and unexpectedly uplifting story of Jake Popyura, a musician and multi-instrumentalist in the indie rock band Supermilk, who was diagnosed with ALS at just 38. Rather than despair, Jake felt relief—finally understanding the cause behind years of unexplained symptoms. As his physical abilities shift, Jake and his bandmates have chosen adaptation over retreat, pouring their energy into their recent album Lazy Teenage Boasts. Balancing terminal illness, mental h...
The emotional aftermath of losing someone to ALS is a journey rarely discussed but vitally important to understand. Caroline, Jill, Jenny, and Deb—four remarkable women who lost husbands and a sister to ALS—share their paths through grief toward finding purpose and even joy again. Years after their losses, these women formed "Antiques Roadshow for ALS," a cycling team of women over 60 who donned pearls, vintage clothing, and tutus while raising over $28,000 for ALS TDI's research....
In this heartfelt episode, we meet the individuals behind Always Lifting Spirits, Chair Force 1 Foundation, Operation Ramp It Up, Que4Care and the Cincinnati Reds — a community who turned their ALS grief into life-changing support for others. From accessible vans to wheelchair ramps to lift chairs and patient care, these local nonprofits are honoring those they've lost to ALS, by providing crucial support to ALS families. Although their capacities so far only allow them to meet the need...
Here, 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 ...
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...
What 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 di...
Welcome 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 opera...
Here 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 a...
Imagine 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 bee...
What 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-cl...
"LUKi and the Lights" is not just an animated short film; it's a beacon for children trying to grasp the complexities of ALS. Inspired by the real-life journey of Anjo Snijders and Sascha Groen, this episode unravels how their personal ALS/MND experiences fueled the creation of a groundbreaking resource for families worldwide. Hear how the layers of creativity, medical accuracy, and emotional authenticity make this film a vital tool for understanding ALS/MND. Meet my insightful guests ...
To 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...
In 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 he...
Grateful 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 affec...
So 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 po...
In 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...
In 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 po...
In 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 poig...
In the first episode of Season 5, I delve into the inspiring outreach of ALS Family of Faith with guests Dawn Delaloye and Tanya Hageman. Listen in as they illuminate the profound impact of their nonprofit organization, dedicated to providing free emotional and spiritual support to individuals and families living with ALS. From patients battling the disease to their devoted caregivers and even friends and family, ALS Family of Faith extends a compassionate hand to all affected by this devasta...