I'm Dying to Tell You

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What does it really mean to have someone who understands what it’s like to live with ALS? In this episode of I’m Dying To Tell You, we explore the power of ALS peer support and one-on-one connection with three I AM ALS Peer Mentors and the staff member who oversees the program.

We talk about what ALS peer mentoring looks like, how mentors support people living with ALS and their families, why shared experience can be so powerful and how connecting with someone who truly “gets it” can help people navigate the emotional and practical challenges of an ALS diagnosis.

If you or someone you love is living with ALS, newly diagnosed, caring for someone with ALS, or simply looking for connection and community, this conversation offers an inside look at how peer mentoring can remind us that we don’t have to navigate ALS alone. 

We also chat about an upcoming virtual I AM ALS Open House where you can hear from all the community teams and explore all the ways to get involved and find your team. Thank you for being here and sharing this episode with a friend. Hugs, Lorri

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Meet Andy Johnson, diagnosed with ALS at just 40—and determined not to let ALS define him.  I’ve been following him on Instagram as @AndyAtrophy, where his humor and ability to find the funny in life with ALS has me smiling.  In this conversation, Andy shares his journey from New York actor and model to husband, cyclist, storyteller and ALS advocate. We talk about humor, identity, marriage, the Tri-State Trek, and finding ways to keep living—and laughing—in the face of ALS.  Because ALS may be part of Andy’s story, but it certainly isn’t the whole story.  This is a conversation about ALS, but it’s really about living life on your own terms, finding reasons to laugh and remembering that a diagnosis doesn’t get to tell you who you are.   Thank you for listening in, recommending this to others and for being a part of this amazing community.  Hugs, Lorri

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In this special roundtable episode, I welcome three fellow ALS podcasters for a conversation about the stories that stay with us, the people we’ll never forget, and why a microphone can become a lifeline.

So happy to chat with Alison Burell-Stanley and David Stanley, hosts of I Lost My Person, who share how losing spouses to ALS eventually led them to friendship, love, and a shared mission of helping others navigate grief. Together they talk about remembering the people we’ve lost, saying their names, laughing at the memories, and discovering that joy and grief can exist side by side.

Cory Mosley, host of ALS Matters, offers the perspective of someone living with familial ALS while navigating the realities of treatment, advocacy, and uncertainty. He shares what he’s learned about turning overwhelming medical information into conversations that people can actually understand—and why stories often teach us more than statistics.

Together, we discuss:  living with grief while still finding joy, what listeners have taught us over the years, how podcasts create community when people feel isolated and more.                      

If this episode encouraged you, please subscribe, leave a review, and share it with someone who needs to hear these stories. Every share helps another family find hope.  Hugs, Lorri

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What happens when the life you’re just beginning suddenly changes forever?

Hannah Broermann and Logan Chowning were newly married, building a home, and dreaming about the future when Hannah began experiencing symptoms that eventually led to a diagnosis of ALS at just 27 years old.

In this episode, Hannah and Logan share the shock of diagnosis, the uncertainty that followed and how they’ve learned to navigate marriage, caregiving and a future they never expected. They also open up about finding strength in community, embracing hope, and choosing to keep building a meaningful life together.

Whether you’re living with ALS, supporting someone you love, or facing an unexpected challenge of your own, I hope this conversation reminds you that even when life changes, hope and love can still grow. 

In this episode:
• Young onset ALS
• ALS diagnosis at age 27
• Marriage and caregiving
• Finding strength through community
• Living with hope and purpose

If this episode encourages you, please follow I’m Dying To Tell You, leave a review, and share it with someone who could use a little hope today.  If it's on your heart, follow Hannah and Logan on Facebook and attend or support their upcoming Hope for Hannah event.  Hugs, Lorri

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Here, I’m joined by six members of Many Shades of ALS, a community team within I AM ALS, for a roundtable that breaks the stereotype of who gets ALS. 

We talk honestly about “ghosting” after diagnosis and why people disappear even when they care, then get specific about what real support looks like. We also name the moments that sting most: when people speak to our caregivers instead of speaking to us, or when impatience turns a conversation into a dismissal.

Many Shades of ALS also pushes the bigger fight forward. We dig into awareness gaps for people of color, the need for natural history studies, and why diverse ALS clinical research is not optional if we want better treatments and, ultimately, a cure. 

If this conversation changes the way you think about ALS, help us widen the circle: subscribe, share this with a friend, and leave a review so more listeners can find these stories. Thank you for listening. Hugs, Lorri

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Meet 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 experiences
Erin 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, Lorri

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For 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, Lorri

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This 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.  

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Grammy-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.

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In 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, Lorri

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