I'm Dying to Tell You

"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 — Toby Cochran, Adrian Ochoa, and Dr. Melinda Kavanaugh — who reveal the unexpected journey behind this project. Dr. Kavanaugh shares her unique path into the collaboration, while Toby and Adrian discuss how this team navigated challenges to create a story that resonates globally and transcends cultural and linguistic barriers. Their dedication ensures the film retains its heartfelt essence and medical integrity, proving invaluable for children and families.

Beyond the screen, "LUKi and the Lights" is making waves with its global reach and festival appearances, even vying for Oscar consideration.   As a follow-up to this episode, we invite you to participate in a Special Virtual Screening, Tuesday, November 12th at 7pm EST, where you can connect with the creators and delve deeper into the mission of spreading ALS awareness. Join us in supporting this initiative by visiting Global Neuro YCare’s website to help bring LUKi's message to families worldwide.  Thank you for sharing LUKi with your friends and family.  If it's on your heart to review this episode to help share LUKi, thank you for doing so!

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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 Centenarian, a 76-page self-published book that melds anecdotes, photos, and life advice.  In Mildred's book, readers embark on a journey through the extraordinary life lessons of a centenarian whose vitality and wisdom defy age.  The New York-born Kirschenbaum became a viral sensation almost immediately by being herself and sharing what she has learned over the past 100 years.  I was so grateful to ask her about the what she believes is most important in life and of course what she's "Dying To Tell" us.  Mildred stands as a testament to the power of embracing life's joys, fostering connections, and approaching each day with unwavering zest.  Enjoy and thank you for listening.  Hugs, Lorri

Thank you for celebrating this special milestone by inviting your friends to listen in.  If you love listening to this podcast, please leave a rating & review by scrolling down my show page, selecting a star rating, and tapping “Write a review” here.

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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 healing in face of unspeakable adversity.  Here, Aaron talks about his perspective on the importance of a positive mindset and living in the present moment.  His beautiful message will inspire anyone seeking a more successful, purposeful and resilient life.  Aaron has found creative and entertaining ways to put his message out.  The most recent being a star studded album titled "The Impossible Dream" which was created to raise awareness and help end ALS.   'The Impossible Dream" is available now and includes artists such including Tony and Emmy winning film star Neil Patrick Harris, multi platinum, singer, songwriter, and Tony nominee Josh Groban, Emmy, Grammy, Tony, and Pulitzer Prize winner Lin-Manuel Miranda, Tony and Emmy winner Kristen Chenoweth, Tony winner Kelli Ohara and Tony, Grammy and Emmy winner and Academy award nominee, Leslie Odom, Jr. and many more.  I'm so incredibly grateful to Aaron for opening up about his personal journey with ALS.  He inspires me in my own ALS journey.  Thanks for listening, Hugs, Lorri

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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 affecting him & what it’s like living out this journey in the public eye.   He updates us on his family, his music projects & how we all can join his efforts to find ALS cures.  Hop gives a sneak peek of their upcoming Harmony for Hope Gala in Atlanta, Georgia on September 14, 2024 - which will be a one of a kind evening with performances by Zac Brown, Clay Cook, Coy Bowles, Danny De Los Reyes, Kristian Bush, Lilith (Lily Costner) and other special guests.   Listen in to our conversation & share with a friend.  Hugs, Lorri

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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 pounds to now not even being able to pick up a pencil.  He lets us know how he's able to maintain a positive attitude and find great joy in life despite losing his ability to walk, talk and even breathe on his own.  It’s no surprise that Kerry is now giving back through his own organization, The Goode Foundation whose mission is to support patients and families affected by ALS and fund ALS research.  We talk about the motivation to share his journey with ALS and his faith in the book that he typed with his eyes after ALS took his ability to move his fingers, “Goode and Faithful Servant: The Kerry Goode Story.”  Our entire conversation here was recorded with Kerry using his eyes to type his answers to my questions.  It’s remarkable and so is Kerry.  Thanks for listening in and sharing.  Hugs, Lorri
https://www.goodefoundation.org/

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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 improved ALS awareness and diagnostic practices. Thank you for listening in. Hugs, Lorri

Request an I AM ALS panel: https://www.iamals.org/action/request-a-panel/
Email Bob Scannell: [email protected]

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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 poignant insights, offering listeners a profound glimpse into the resilience of the human spirit in the face of unimaginable challenges.  Sara shares how she told her young boys about her diagnosis and how she is navigating parenthood in this new season.  Sara also shares how she is working with a death doula to assist her with end-of-life.  This episode is a reminder of the indomitable strength found within us all.  Follow Sara:  https://www.instagram.com/theanandapivot/
Thank you for listening in.  Hugs, Lorri

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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 devastating disease. In a time often overshadowed by darkness and isolation, Dawn and Tanya shed light on the transformative power of their partnership with the ALS community, offering a beacon of hope amidst the heavy burdens of this incurable illness. ALS Family of Faith was founded by Steve Cochlan, who was diagnosed with ALS in 2019.  Steve recognized that there wasn't an organized effort offering spiritual support that he was seeking, so he started one himself.  Listen in to this example of love and community and thank you for sharing with a friend.  Hugs, Lorri

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When 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 was good for all of us to discuss.  I’m incredibly grateful for these bonus years since only 5% of ALS patients live longer than 20 years.  Join us for an intimate and candid conversation as we commemorate this significant milestone and look towards the future with hope & gratitude.  Help celebrate with me by sharing this episode with a friend and leaving a review wherever you listen.  Thank you for your incredible support.  Hugs, Lorri

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