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, Lorri

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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, Lorri

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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, Lorri

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What 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 barrier to making a significant impact.

From neighborhood events featuring merchandise tables, food trucks, and entertainment, the Yozwiak siblings have mastered the art of community outreach, having raised nearly $330,000 so far.  Join us as we hear Brady & Brooklyn talk about community support and how friends, family, and neighbors have rallied around their cause. Hear the powerful lessons they've learned about resilience, creativity, and leadership in the face of adversity. Their commitment to support ALS research is powerful, as they continue to build on their father's legacy and encourage others to join them in the fight against ALS.  Thank you for sharing this precious chat with a friend and visiting their fundraising page directly supporting the ALS Therapy Development Institute.  Hugs, Lorri

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"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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