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Lorri Carey
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I'm Dying to Tell You
Salym Liufau: Finding New Ways to Live with ALS for Her Four Children
Send a textIn 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 inte...
2026-01-27
50 min
I'm Dying to Tell You
Young Widow’s ALS Story: Faith, Love & Their Miracle Baby -2/2
Send a textIn 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 “...
2025-12-10
37 min
I'm Dying to Tell You
Young Widow’s ALS Story: Faith, Love & Their Miracle Baby -1/2
Send a textI 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...
2025-12-08
48 min
I'm Dying to Tell You
Veterans, ALS and the Will to Fight!
Send a textThis 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 evolv...
2025-11-11
47 min
I'm Dying to Tell You
Happy Hour with Her ALS Story and "Hop" of Zac Brown Band
Send a textIn 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 symp...
2025-09-24
59 min
I'm Dying to Tell You
Supermilk's Jake Popyura: Navigating ALS with Humor & Music
Send a textThis 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...
2025-08-08
48 min
I'm Dying to Tell You
Life After ALS: A Journey of Healing and Hope
Send a textThe 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 lear...
2025-07-17
58 min
I'm Dying to Tell You
Love, Legacy & Lou Gehrig Day: A Team Effort Against ALS
Send a textIn 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...
2025-05-20
59 min
I'm Dying to Tell You
Elin Adcock - Her Journey Facing ALS and FTD Together
Send a textHere, 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. H...
2025-05-06
49 min
I'm Dying to Tell You
Questions About ALS? There's an App for That: Roon!
Send a textWhen 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...
2025-04-02
50 min
I'm Dying to Tell You
Carrying an ALS Gene: Mindy Uhrlaub’s Story of Hope & Action
Send a textWhat 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 cond...
2025-03-05
49 min
I'm Dying to Tell You
I AM ALS Turns 6: Community Teams Inspiring Change
Send a textWelcome 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...
2025-01-28
1h 06
I'm Dying to Tell You
Fashion, HOPE, ALS Reversals: All with Dr. Richard Bedlack
Send a textHere 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...
2025-01-15
1h 03
I'm Dying to Tell You
Facing ALS with Resilience: Johnny Rodriguez's Inspiring Journey
Send a textImagine 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...
2024-12-12
54 min
I'm Dying to Tell You
"Clayton Rakes" - Two Siblings’ Mission to Honor Their Dad and Fight ALS
Send a textWhat 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...
2024-11-25
37 min
I'm Dying to Tell You
Episode 100: A Chat with 100-Year-Old Mildred Kirschenbaum
Send a textTo 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 jo...
2024-10-01
43 min
I'm Dying to Tell You
Broadway's Aaron Lazar on Making the Impossible, Possible ... Even with ALS
Send a textIn 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...
2024-09-11
1h 00
I'm Dying to Tell You
Zac Brown Band's John Driskell Hopkins: An Update on ALS, Life and Music
Send a textGrateful 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 publ...
2024-08-06
1h 01
I'm Dying to Tell You
Goode and Faithful Servant: A Chat with Kerry Goode
Send a textSo 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 kn...
2024-07-10
31 min
I'm Dying to Tell You
Could it be ALS? - Bob Scannell on ALS Misdiagnosis
Send a textIn 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...
2024-06-11
43 min
I'm Dying to Tell You
“Staying Loudly” - Sam’s Positive Mindset with ALS
Send a textIn 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...
2024-05-07
55 min
I'm Dying to Tell You
37-year-old Sara Bennett: Life, Death & Parenting with ALS
Send a textIn 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 fac...
2024-04-17
53 min
I'm Dying to Tell You
LOVE & SUPPORT from ALS Family of Faith
Send a textIn 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 devastating disease. In a time often overshadowed by darkness and isolation, Dawn and Tanya shed light...
2024-03-13
53 min
I'm Dying to Tell You
20 Years Living with ALS: A Special Q&A with My Sons Co-Hosting
Send a textWhen I was initially diagnosed with ALS, I was given the typical prognosis of 2-5 years to live. That was 20 years ago. Today, alongside my two sons, Paul and Christian, we reflect on this journey, answer listener questions, and explore the lessons learned along the way. I answer your questions about life with ALS, my thoughts on the future and advice to others finding themselves in the face of adversity. Then, I find out what questions my sons have for me after 20 years with ALS. Although their questions were tough to answer, I think it w...
2024-02-13
1h 11
I'm Dying to Tell You
Rebuilding Together After ALS Loss: Juliet Taylor & Tim Abeska
Send a textIn this episode I chat with Juliet Taylor & Tim Abeska who each lost spouse to ALS. They met in a virtual support group for widow & widowers. Realizing they lived in the same area and had common interests, they met for coffee and their relationship grew from there. Today they encourage each other to love & honor their late spouse, enjoy life and be active ALS advocates to help end ALS. Here, Juliet & Tim share about their late spouses, Jeff Sarnacki & Mary Ann Abeska. We talk about how they are supporting each other’s grief journey and wh...
2024-01-09
45 min
I'm Dying to Tell You
Rebuilding Together After ALS Loss: Juliet Taylor & Tim Abeska
In this episode I chat with Juliet Taylor & Tim Abeska who each lost their spouse to ALS. They met in a virtual support group for widow & widowers. Realizing they lived in the same area and had common interests, they met for coffee and their relationship grew from there. Today they encourage each other to love & honor their late spouse, enjoy life and be active ALS advocates to help end ALS. Here, Juliet & Tim share about their late spouses, Jeff Sarnacki & Mary Ann Abeska. We talk about how they are supporting each other’s grief journey and what advice they have f...
2024-01-05
45 min
I'm Dying to Tell You
Community Building Amidst ALS: Karen (thekaregiver) & Tony Vick
Send a textHere you’ll meet Tony and Karen Vick. Tony, a brave U.S. Veteran, has been living with ALS for the past 6 years. Karen, his dedicated wife, serves as his full-time caregiver, showcasing the strength of their bond. Despite facing the challenges of ALS, Tony and Karen lead a fulfilling life and share their journey on Karen's Instagram account, https://www.instagram.com/thekaregiver/. After realizing how many young caregivers are out there, they decided to share more on the day-to-day realities, triumphs, and tribulations of living with ALS. They hope to help other caregiv...
2023-12-12
52 min
I'm Dying to Tell You
How to Find Gratitude During Hard Times
Send a textIn this episode, I talk about having gratitude even during hard times. I recorded this on Thanksgiving Day. Thanksgiving encourages us to pause and express gratitude for the positive aspects of our lives. For me, It always fosters a sense of gratitude, reflection, and appreciation for the blessings and relationships in my life. This morning I woke up being extra grateful for all I have, for the relationships that I am a part of and for the extra time that I have been given. Here, I hope to encourage you to seek out GRATITUDE every...
2023-11-28
42 min
I'm Dying to Tell You
Amanda Stevens: Wife, Mom, Caregiver & Founder of AxeALS
Send a textHere I chat with Amanda Stevens, wife & caregiver to Eric Stevens – former NFL player & L.A. Firefighter, both introduced to us on The Ellen DeGeneres Show in 2019. Amanda and Eric were married only one month when Eric was diagnosed with ALS at a young 29 years old. We fell in love with this young couple as they appeared on the Ellen show three times and even were on to announce that they were expecting a baby. In the past 4 years since receiving Eric's ALS diagnosis, Amanda has dedicated her life to caring for her husband and t...
2023-11-13
49 min
Brain & Life
Finding Strength in ALS Advocacy with Podcaster Lorri Carey
This week Dr. Daniel Correa speaks with podcaster and advocate Lorri Carey. Lorri shares her story of being diagnosed with amyotrophic lateral sclerosis (ALS) and how her family has joined advocacy efforts for people in the community living with the condition. Next Dr. Correa sits down with returning medical expert, Dr. Stephen Goutman, an assistant professor in the Department of Neurology and director of the Pranger Amyotrophic Lateral Sclerosis Clinic and associate director of the ALS Center of Excellence at Michigan Medicine. Dr. Goutman discusses the different types of ALS and offers advice on approaching the conversation of possible...
2023-10-26
38 min
I'm Dying to Tell You
Teen Actor Lance Alexander: "From Junk to Hunk"
Send a textIn this episode I talk to Lance Alexander, a teen Hollywood actor from my hometown in Ohio. You might know Lance from his role as Elvis, a recurring role on the award-winning Netflix show “Family Reunion.” Like many, during the Pandemic of 2020, he was isolated and fighting depression and decided to fight back. Lance had a public struggle of being overweight and bullied most of his childhood. I love that he is inspired to share his journey. Here Lance shares his motivation for creating his book and campaign, “From Junk to Hunk.” Lance shares how the key to...
2023-10-24
45 min
I'm Dying to Tell You
Radio Legend Jim Scott: Living Positively with ALS
Send a textHere my husband Paul & I talk to long-time radio personality Jim Scott from Cincinnati. He has been heard all over the country during his 55+ years on the air, mostly on 700 WLW Radio. He simply is one of the most giving & positive people I know. Although most of his life has been spent using his voice in his radio career, he is now battling a disease that is affecting his voice and more. Jim was diagnosed with ALS, in 2022. Even while living with a fatal disease with no cure, Jim continues to try to “spark joy” wi...
2023-10-12
44 min
I'm Dying to Tell You
Military Veteran Kate Peters Battling the Enemy: ALS
Send a textHere I chat with military veteran of both the U.S. Marine Corps and the U.S. Navy, Kate Peters. She served in the USMC 2007-2015, USN 2015-2020 and served in Operation Iraqi Freedom. Kate is a mother of two boys, three and five and was medically retired from the military after being diagnosed with ALS, a fatal disease that has no cure. She was diagnosed with ALS in 2020 a few weeks after her second son was born, after about 2 and 1/2 years of symptoms and a misdiagnosis. I talk to Kate about her military exper...
2023-09-26
44 min
I'm Dying to Tell You
"Hope Fights Back" - Andrea Peet & Meredith Atwood
Send a textHere I chat with a young woman living with ALS, who defies all odds by finishing fifty marathons and, in turn, inspires people to “go on, be brave.” I'm absolutely thrilled to catch up with Andrea Lytle Peet again and meet Meredith Atwood in this chat. Andrea and Meredith coauthor Andrea's new memoir titled, "Hope Fights Back." Andrea was thirty-three years old—newly married and a triathlete—when she received the death sentence of an ALS diagnosis (also known as Lou Gehrig's disease). After grappling with the fact that she will likely become paralyzed and die wi...
2023-08-22
48 min
I'm Dying to Tell You
Tackling Tough Conversations About ALS (Part 2/2)
Send a textHere I continue my talk with Amy, Jim and Matt who are living with ALS about having the toughest conversations of their lives. When you’re living with a terminal illness that doesn’t have a cure and typically gives you just a few years to live, like ALS, the most difficult conversations come up quick. In this Part 2 episode, I continue chatting with Amy Stiens, Jim Plews-Ogan and Matt Klingenberg. I am grateful for their willingness to chat about how they were told they had a terminal illness with no cure, how they told the...
2023-07-25
42 min
I'm Dying to Tell You
Tackling Tough Conversations About ALS (Part 1/2)
Send a textWhen you’re living with a terminal illness that doesn’t have a cure and typically gives you just a few years to live, like ALS, the most difficult conversations come up quick. In this episode, I bring together 3 others who are living with ALS to talk about their experiences with these tough conversations. Here, I’m talking to Amy Stiens, Jim Plews-Ogan and Matt Klingenberg. I am grateful for their willingness to chat about how they were told they had a terminal illness with no cure, how they told their children and friends and even...
2023-07-12
50 min
I'm Dying to Tell You
Power of Positivity with Child Abuse Survivor, Courtney Cirabisi
Send a textIn this episode you'll hear my chat with Courtney Cirabisi, a 30 year old who lives in Bakersfield, California. She became reliant on a wheelchair for everyday mobility after she was child abused by her dad when she was 9 months old, resulting with a spinal cord injury. I've been following her journey as she shows us that life doesn’t stop after you have been abused and have lost the ability to walk. Courtney shares how she believes the mind is the most important thing a person can have. With that knowledge she is able to li...
2023-06-26
44 min
I'm Dying to Tell You
Q&A: Young Adults Living with ALS (Part 2/2)
Send a textMay is ALS Awareness month. So in the spirit of increasing awareness of ALS, a terminal illness with no cure, I continue my chat with 3 others living with ALS. We answer the questions sent in by listeners of this podcast about what it's like being a young adult and living with a terminal illness. My guests, Ashley Rivera and Mira Hudson were diagnosed at 24 and James Smith was diagnosed at 36. They dig deep and open their hearts to answer your questions like, "Can you share about the moment you were diagnosed with ALS?" "How do yo...
2023-05-18
46 min
I'm Dying to Tell You
Q&A: Young Adults Living with ALS (Part1/2)
Send a textIn this special Q&A episode, 3 young adults answer questions you sent in about ALS and living with a terminal illness. May is ALS Awareness month. So in the spirit of increasing awareness of ALS, a terminal illness with no cure, I chatted with 3 others living with ALS. We answer the questions sent in by listeners of this podcast about what it's like being a young adult and living with a terminal illness. My guests, Ashley Rivera and Mira Hudson were diagnosed at 24 and James Smith was diagnosed at 36. They dig deep and open their...
2023-05-09
56 min
The Kyle Carpenter Podcast
#16 - I'm dying to tell you with Lorri Carey
After being diagnosed with ALS and two and a half years left to live, Lorri Carey has, now, been living life to the fullest for 19 years. Through her profound perspective and appreciation for life, Lorri shares her inspirational journey with the complex and fatal disease of ALS.Lorri has devoted the time she has left to her podcast, I’m Dying To Tell You, where she shares the stories of people who inspire her.ALS (Amyotrophic Lateral Sclerosis), also know as “Lou Gehrig’s disease”, is a progressive neurodegenerative disease that, over time, affects the nerve ce...
2023-05-02
1h 11
I'm Dying to Tell You
"The Wisdom of Morrie" with His Son Rob Schwartz
Send a textOn this episode of I'm Dying To Tell You Podcast, I talk to Rob Schwartz son of Morrie Schwartz from the classic book Tuesdays with Morrie. We chat about the newly released book, “The Wisdom of Morrie.” The book was written by Morrie Schwartz, recently edited and released by Rob. The number one bestseller Tuesdays with Morrie was written from conversations with author Mitch Albom after Morrie was sick and knew he was in the process of dying from ALS. However, this newly released book, The Wisdom of Morrie was written by Morrie before he was di...
2023-04-24
42 min
I'm Dying to Tell You
Zac Brown Band's John Driskell Hopkins & His Battle with ALS
Send a text Here I sit down with Zac Brown Band founding member, John Driskell Hopkins who is using his stage to help bring awareness to ALS, also known as Lou Gehrig’s Disease. John was diagnosed with ALS, a terminal illness with no cure in 2021. John, also known as Hop, decided to go public with his ALS hoping his reach could result in awareness, action and ultimately support for an ALS cure. He and his wife, Jennifer formed the Hop On A Cure organization which supports promising ALS research. In this episode, I chat with John about...
2023-04-11
1h 02
I'm Dying to Tell You
Fighting ALS with Humor: Brooke Eby
Send a textHere I talk to 34 year old TikToker, Brooke Eby who is using humor and social media to navigate life after being diagnosed with a fatal disease. Brooke was diagnosed with the terminal illness, ALS, at a young 33. With the support of her family, friends, and co-workers, Brooke's been able to laugh in the face of ALS by using humor on social media.. Brooke created a TikTok account @LimpBroozkit to help explain what she was going through without making it a heavy conversation. Not only is creating TikTok videos about ALS a case of "laughter is th...
2023-03-28
52 min
I'm Dying to Tell You
John Carthum: Outliving ALS By 27 Years
Send a textHere I talk to someone who has ALS for over 25 years. I reconnect with a former colleague from Kraft Nabisco, John Carthum. It was a few decades ago when I heard John left the company for medical reasons. I never knew what hand he was dealt that made him have to leave his career at such a young age until I was diagnosed with ALS in 2004. That’s when I learned that it was also ALS that John was diagnosed with in 1995. Now he is outliving the typical 2 to 5 year death sentence that comes wi...
2023-03-09
41 min
I'm Dying to Tell You
4 Easy Ways To Spread More Love
Send a textIn this episode, it's just ME talking about LOVE :)Here I mix it up a little and talk about what's on my heart. This releases on Valentines Day, so talking about LOVE ... specifically 4 Easy Ways To Spread More Love. I talk about the first few things that came to mind, Listen, Words, Time and Action. I thought to myself, these seem so simple but realized I always need reminders, so why not share? We all have the power to show others they are loved and not alone. There are no limits on love with...
2023-02-10
23 min
I'm Dying to Tell You
Brian Wallach & Sandra Abrevaya: Action Born from Hope
Send a textHere I chat with Brian Wallach and his wife Sandra Abrevaya, co-founders of I AM ALS and Synapticure. At 37, Brian was diagnosed with ALS—on the same day he and he and Sandra brought their second daughter home from the hospital. In an instant, everything changed. They went from being a couple only a few years removed from both working at the White House to not knowing if Brian would live to see his 40th birthday. An otherwise healthy former college athlete, Brian expected to find a system built to help him and Sandra deal wi...
2023-01-25
52 min
I'm Dying to Tell You
Kylan Morris and Carrying on Her Mama's Legacy
Send a textHere I talk to Kylan Morris, 25, who recently lost her mother to ALS about how she's already following her mama's marching orders to help those battling ALS. "Please take my baton & run faster & farther." That was Sandy Morris's last twitter message to her fellow advocates fighting for ALS cures with her. Sandy Morris passed away on August 28, 2022 at age 56 from ALS. I chat with Kylan as she shares what it was like losing her mom at such a young age. Just a few months after losing her mama, Kylan was eager to share what she l...
2023-01-11
44 min
I'm Dying to Tell You
INSPIRED REPLAY: "Words to Live By - a Chat with Jamie and Scott Smith"
Send a textI knew I wanted to do an episode about HOPE, heading into the new year. On December 8th we lost our friend Scott Smith and quickly I knew his words were all I needed to share. This episode is an inspired replay. In memory of our dear friend Scott Smith, I added a new intro, a message from Jamie and then share my original chat with Scott and Jamie Smith. Originally released in 2021, as they were fighting Scott's ALS, Scott and Jamie shared their hearts to encourage others. Silver Linings, Courage Under Fire, Nothing to Lose...
2022-12-21
49 min
I'm Dying to Tell You
Michael Platt: Teen Baker Fights Hunger with "Sweets for a Cause"
Send a textSo happy to talk to 17 year old Michael C. Platt, a teen baker, social entrepreneur, food-justice advocate and author. He inspires me with his giving spirit and passion to help others. Michael recently released his first cookbook to bring awareness to food and poverty. His book, Michaels Desserts, Sweets for a Cause aims to build skills in the kitchen, celebrate history, and inspire activism. We also chat about his baking company, Michael's Desserts, his one-for-one model, his non-profit P.L.L.A.T.E. and his inspiration behind it all. This young teen has such...
2022-12-13
30 min
I'm Dying to Tell You
Michael Platt: Teen Baker Fights Hunger with "Sweets for a Cause"
Here I chat with a 17 year old who is on a mission to end food insecurity, in a fun and creative way. So happy to talk to Michael C. Platt, a teen baker, social entrepreneur, food-justice advocate and author. He inspires me with his giving spirit and passion to help others. Michael recently released his first cookbook to bring awareness to food and poverty. His book, Michaels Desserts, Sweets for a Cause aims to build skills in the kitchen, celebrate history, and inspire activism. We also chat about his baking company, Michael's Desserts, his one-for-one model, his non-profit P.L.L.A...
2022-12-06
30 min
I'm Dying to Tell You
Luka & the Lights: Introducing the First Robot with ALS
Send a textIn this episode I chat with those who created Luka, the first robot to have ALS and hear the inspiration behind it all. I chat with the team that is bringing the first robot with ALS to the big screen. The film, Luka & the Lights, is inspired by the real-life of Sascha Groen and her husband Anjo Snijders who is battling ALS. Sascha created the robot character Luka and wrote and illustrated his story to help explain to their children what’s happening with their dad who was diagnosed with ALS. Also in our chat is...
2022-11-21
46 min
I'm Dying to Tell You
How Cancer Changed Their Lives for the Better: Michael & Ashlee Cramer
Send a textIn this episode, hear 21 year old Michael Cramer who was given just eight months to live share his journey on beating a rare and aggressive blood cancer. At age 19, Michael had been an athletic, healthy teenager. He was a surfer and sailor, rarely sick and had never been hospitalized. A routine blood test led to a life-changing cancer diagnosis. After Michael was diagnosed with Hepatosplenic T-cell Lymphoma (HSTCL) Michael and his mom Ashlee Cramer were terrified. They knew Michael might not survive and could only have just eight months to live. That was in July 20...
2022-11-08
42 min