Erin Taylor and Her Mom Lily on Living Fully with ALS

Send us Fan MailMeet the inspiring duo behind the @unsteadyandready Instagram account, sharing life with ALS.  Here, I sit down with Erin Taylor, diagnosed with ALS at 23, to hear what it’s like to build a life in your twenties while your body changes fast and your natural voice fades.  Erin and her mom Lily show us how advocacy, humor, and everyday love can keep you feeling like a whole person even when ALS is always in the room.  We chat about:• Grieving lost dreams and rebuilding purpose through ALS advocacy• Losing a natural voice and using eye gaze with an AI clone voice• Choosing authenticity online to help others feel seen• Managing dark moments by focusing on what we can control• Finding joy in small outings and planning energy for big experiencesErin shares her heart to educate people that ALS can affect anyone, even someone in their 20's.  She said she didn't know that was possible when she was diagnosed.   If you'd like to share Erin's message, please send this episode to a friend.  Thank you. Hugs, LorriFollow and see what's coming next: Instagram,  Facebook,  Twitter, TikTok,  LinkedIn.

Send us Fan MailFor six years, Sam Cunningham felt the subtle but persistent signs that something in his body wasn’t right—leg heaviness, twitching, and strength loss that didn’t add up.  As an athlete, he knew his body, but getting answers proved to be a long and frustrating journey.  In this episode, Sam shares what it’s like to finally receive an ALS diagnosis at 35, the emotional weight of being both devastated and validated, and how persistence, detailed documentation, and the right clinician ultimately connected the dots.  We also explore exercise and ALS, adapting to new limits, and how faith, mindset, and unexpected support are helping him navigate this next chapter.  Thank you for listening in.  Hugs, LorriFollow and see what's coming next: Instagram,  Facebook,  Twitter, TikTok,  LinkedIn.

Send us Fan MailThis episode is tender.   In 2021, I interviewed a 28-year-old woman named Leah Stavenhagen. She had been diagnosed with ALS at 26. I remember thinking how young she was. How unfair it felt.  But Leah didn’t shrink after her diagnosis. She built something incredible.  What began as “In Her ALS Shoes” is now known as Her ALS Story — a sisterhood for women diagnosed with ALS under 35. A place to feel seen & less alone.  She also set out to show that ALS was not an "older white man's disease," that it could hit anyone, any age.  Leah recently passed away at a young 33.  Here, I sit down with 3 young ladies who are all living with ALS & active in Her ALS Story.   Angelina Fanous, Gwen Petersen and Karin Pacold share what Leah meant to them personally & the impact of the Her ALS Story community during their own battle with ALS.  As someone diagnosed with ALS at 38, I know the value of this sisterhood that Leah created.  It truly can be a lifeline.  I’m honored to share this tribute episode for Leah as we reflect on her impact and continue our fight in her memory.  Thank you for listening and sharing in memory of Leah.  Follow and see what's coming next: Instagram,  Facebook,  Twitter, TikTok,  LinkedIn.

Send us Fan MailGrammy-nominated, platinum-selling singer-songwriter Eric Paslay joins me to talk about about the night he drew my song idea out of a hat.Eric brought his unique songwriting experience, "Song In A Hat" to Hop On A Cure's "Harmony for Hope"" event and something magical happened there.  My "Song In A Hat" idea was randomly drawn.  This led to me joining musicians Eric Paslay, Kristian Bush, Chris Gelbuda, Cyndi Thomson and DJ Goodman on stage to witness my song idea turn into an actual song - in under just 10 minutes.  My idea was "Come Into Our World."  My intent was to have a song created that would invite others to understand ALS and join our fight for a cure. Here we learn more about this master of music, talk about that evening and how we can wrap up the song and release to the world.  Eric has made a significant impact on the music industry with his hit singles "Friday Night", "Song About a Girl", and "She Don't Love You".  He has written and co-written many hits for other artists, including Lady A, Rascal Flatts, Keith Urban, Amy Grant, Dierks Bentley, Charles Kelley and more.  Eric co-wrote Jake Owen's "Barefoot Blue Jean Night", the Will Hoge/Eli Young Band song "Even If It Breaks Your Heart", and Love and Theft's "Angel Eyes" all of which were number 1 singles on the country charts. He was diagnosed with Type 1 diabetes at 10 years old, and uses his platform to advocate for diabetes awareness, inspiring and supporting others living with the condition.Listen in to our heartfelt and powerful conversation bursting with HOPE.  Thank you for sharing with a friend.Follow and see what's coming next: Instagram,  Facebook,  Twitter, TikTok,  LinkedIn.

Send us Fan MailIn this deeply moving episode, I sit down with Salym Liufau, a 33-year-old mother of four living with ALS, whose grace and honesty have touched thousands online. Salym opens up about adapting to a body that’s changing while holding tight to joy, purpose, and presence. We talk about motherhood in the face of uncertainty, the traditions she’s building for her children, the legacy she hopes to leave behind, and the truths she feels called to share while she still can. This conversation is tender, grounding, and a powerful reminder to live with intention, love boldly, and never postpone what matters most. Salym is also an active member of Her ALS Story, a non-profit organization specifically for women diagnosed with ALS before the age of 35.  Thank you for listening and sharing with a friend. Hugs, LorriFollow and see what's coming next: Instagram,  Facebook,  Twitter, TikTok,  LinkedIn.

Send us Fan MailIn this second part of my chat with 33-year-old widow Melanie Lang, we talk about her & her husband Tyler’s biggest miracle, their daughter.   Tyler only spent 6 weeks with his precious baby girl before he died of ALS at a young 33.Melanie’s perspective & big heart shines through as she talks about using their platform “Don’t Waste A Day” to help other families in Tyler’s memory.  Her family will be raising funds to send ALS families on vacations that they wouldn’t experience otherwise.  To learn more about Melanie’s first “Don’t Waste A Day” event, visit here:  https://www.dontwasteaday.org/Listen in & share with a friend.  If it’s on your heart, leave a review to help others find this sweet message.  Hugs, Lorri Follow and see what's coming next: Instagram,  Facebook,  Twitter, TikTok,  LinkedIn.

Send us Fan MailI catch up with 33-year-old widow Melanie Lang to share how she and her husband Tyler faced ALS with relentless honesty, deep faith, and a simple motto that became their North Star: Don’t Waste A Day!If you’re navigating illness, grief, or the heavy unknown, this conversation offers a grounded way forward: focus on today, serve the people in front of you, and let purpose be practical. Listen, share with someone who needs strength, and leave a review to help others find this story.  Hugs, Lorri Follow and see what's coming next: Instagram,  Facebook,  Twitter, TikTok,  LinkedIn.

Send us Fan MailThis Veterans Day episode brings together three service members living with ALS—Liz Fassler (Army), Ron Faretra (Air Force), and John Hudacek (Army)—to share how the discipline, teamwork, and purpose they learned in uniform now guide them through life with this disease. They talk candidly about the realities of ALS, the unique challenges and resources available to veterans, and the importance of building a strong support team. Through stories from the field and insights from daily life, they offer both practical guidance and a reminder that courage doesn’t end when service ends—it evolves.  Thanks for listening and sharing with a friend.  Hugs, LorriFollow and see what's coming next: Instagram,  Facebook,  Twitter, TikTok,  LinkedIn.

Send us Fan MailIn 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.

Send us Fan MailThis 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.