Happy Hour with Her ALS Story and "Hop" of Zac Brown Band

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.  Kelly was diagnosed two years ago and is balancing motherhood and ALS.  Mira had symptoms since age 14 but was misdiagnosed for years before her ALS diagnosis at 24.  John (Hop) continues performing with Zac Brown Band and will play at the Sphere in Las Vegas in December.  The ladies share their fun experience attending a retreat in Cape Cod with 40 other Her ALS Story members.  I love how they each emphasize the importance of community over isolation when battling this terminal illness.  Follow Her ALS Story and witness the incredible strength of this group.  Join John Driskell Hopkins for Harmony for Hope on October 18th in Atlanta, a fundraising gala for ALS research featuring world-class singer-songwriters in an intimate format.  Thanks for listening and sharing with a friend.  Hugs, LorriFollow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

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 health challenges, and a relentless creative drive, Jake leans into dark humor and online community to navigate the journey. His story is a testament to resilience, reinvention, and finding meaning through music in the face of life's harshest realities.  Thanks for listening.  Hugs, LorriFollow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

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. Their stories reveal the complex reality of grief—how it never truly ends but evolves into something you learn to carry alongside new experiences and memories.  These women candidly discuss experiencing depression, anxiety, and PTSD years after their losses, normalizing these ongoing struggles while demonstrating that healing doesn't mean forgetting.  For those currently caregiving or recently bereaved, their stories offer a glimpse into a future where community, purpose, and even joy remain possible. Enjoy the listen and thanks for sharing with a friend. Hugs, LorriFollow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

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 needs of local families, it's a beautiful example of what happens when we lead with love, faith and community.  These four Ohio/Kentucky based foundations have also formed a powerful partnership with the Cincinnati Reds for Lou Gehrig Day on June 2nd.   All MLB teams will be hosting their own Lou Gehrig Day on or around June 2nd as well.  Thanks for listening to this story of legacy, love, and community in action. Hugs, LorriFollow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

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 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, resilience, and the power of transforming personal loss into lasting impact. Whether you're a caregiver, healthcare professional, or someone seeking hope amid hardship, this conversation offers insight, inspiration, and a call for greater awareness.  Thanks for listening and sharing with a friend.  Hugs, Lorri!Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

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 knowledge, practical daily concerns, and the emotional/existential questions that arise. Through short, digestible videos, users can find answers to questions they might never get to ask during brief clinical appointments.This episode offers a masterclass in turning personal tragedy into purpose. Beyond highlighting a valuable resource for the ALS community, it demonstrates how technology, when designed with genuine empathy, can create what Vikram beautifully describes as "a doctor friend who has your back."Download Roon to experience this sanctuary of knowledge, where the burden of searching for reliable information is lifted, and a community of experts and fellow patients are ready to help.  Thanks for sharing with a friend. Hugs, LorriFollow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

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 disease, the stigma surrounding genetic conditions, and how humor, advocacy and community can help navigate these uncertainties. Mindy also talks about her work with End the Legacy, a patient led organization dedicated to the needs and interests of the Genetic ALS & FTD community.This powerful conversation is a reminder that while genetics may shape our path, they don’t define who we are. Tune in for an honest, hopeful discussion about fear, resilience and finding purpose in the face of the unknown.  Listen in and share with a friend.  Hugs, LorriFollow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

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 operating on the ALS clock—pushing for accelerated progress every single day.Today, I’m thrilled to chat with four incredible volunteers, Tim Abeska, Randy Gregory Jr., Cristy Hardin & Deb Winters about how I AM ALS continues to be driven by patient voices, advocating, empowering, and fighting to make ALS a thing of the past. We'll dive into the work of the I AM ALS Community Teams, their ongoing efforts, and how YOU can get involved in this powerful movement.So, listen in and be inspired to join these teams of patients, caregivers, and advocates who prove that the impossible is possible—every single day.  Thank you for sharing this celebration.  Hugs, LorriFollow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

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 about how fashion, music and medicine are all playing a part in the battle against ALS.For 24 years, Dr. Bedlack of the Duke ALS Clinic has been at the forefront of ALS research, driven by a childhood fascination with the brain. His journey has been marked by pivotal moments that shaped his dedication to building a program offering hope and options for ALS patients.  Here, Dr. Bedlack reflects on the significance of HOPE, not only as a treatment strategy but as a vital component of navigating life with ALS.  Dr. Bedlack also shares his learnings after studying the 62 known cases of ALS reversals.  This episode is a testament to the relentless pursuit of a brighter tomorrow, where there is a world without ALS.  Listen in and share with a friend.  Hugs, LorriFollow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

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 been vital in fueling his fight. As a coach, he not only develops athletes but also teaches life skills and resilience. With a holistic approach to managing ALS—including ice baths, meditation, and advocacy through Athletes vs ALS—Johnny exemplifies hope, unity, and perseverance. His journey reminds us of the strength in community and the relentless pursuit of life’s possibilities. Listen in and share with a friend. Hugs, LorriFollow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.