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Young Widow’s ALS Story: Faith, Love & Their Miracle Baby -2/210 Dec 202500:37:28

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In 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 

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Young Widow’s ALS Story: Faith, Love & Their Miracle Baby -1/208 Dec 202500:48:52

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I 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 

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I AM ALS Turns 6: Community Teams Inspiring Change28 Jan 202501:06:29

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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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Sisterhood of the Traveling Wine, Pouring out Positivity and Joy07 Sep 202000:23:43

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Janice Davis was like most of us and having a difficult time when this quarantine season began.   After a friend came by and surprised her with flowers and a hug,  she got the idea to pay that kindness forward and in a big way.  Janice formed an altruistic Facebook group, the Sisterhood of the Traveling Wine which is over 76,000 members strong.  Despite the name, it's not all about wine.  The group is dedicated to spreadling love and showing kindness in a unique way.  The Sisterhood of the Traveling Wine group is finding joy in blessing others in the community.   Tune in and hear more.

Podcast community, photos & show notes at:
https://www.facebook.com/ImDyingToTellYouPodcast/.
Connect: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en and https://twitter.com/LorrisPodcast


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Kids4Cure Brothers Open Up to Parents & Kids on Growing Up with ALS24 Aug 202000:43:08

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I have an intimate chat with my sons, Paul and Chistian Carey - also known as Kids4Cure.  Having learned 16 years ago that their Mom had ALS, a fatal disease with no cure, my sons open up and give advice to parents and other kids.  They share thoughts on telling children about a serious diagnosis.  They also give advice and encouragement to kids who have a loved who is struggling with an illness.   Kds4Cure has raised over $1 Million dollars for ALS research & patient care and Paul & Christian have been active advocates in the ALS fight since they were 11 & 13.  This episode focuses on sharing what they've learned.  Thanks for listening in.

Podcast community, photos & show notes at:
https://www.facebook.com/ImDyingToTellYouPodcast/.
Connect: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en and https://twitter.com/LorrisPodcast

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"Ask Me Anything" - Host Q & A on ALS, Life and Death10 Aug 202000:30:50

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This episode was created by YOU, the listener.  Listeners sent in questions and I answer as many as possible in 30 minutes.  I'm so grateful for all the questions that came in, some light and fun - some deep and serious, some that really made me reflect and others that made me cry.  I love that my listeners feel comfortable asking me anything.  This was such a special experience.  I hope you enjoy.

Podcast community, photos & show notes at:
https://www.facebook.com/ImDyingToTellYouPodcast/.
Connect: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en and https://twitter.com/LorrisPodcast

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Reckless Faith with Beth Guckenberger28 Jul 202000:39:30

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An encouraging conversation with Beth Guckenberger as she shares her personal stories that have fueled her to live a life of reckless faith.  She is a missionary, speaker, author, wife and mother.  Beth and her husband, Todd, serve as Co-Executive Directors of Back2Back Ministries - an international orphan-care organization .  Between biological, foster, and adopted children, they have raised eleven children.  Beth is the author of nine books including adult and children’s titles.  She travels and speaks all over the world about orphan-care and reckless faith.  Her encouragement is absolutely precious.

Podcast community, photos & show notes at:
https://www.facebook.com/ImDyingToTellYouPodcast/.
Connect: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en and https://twitter.com/LorrisPodcast

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Rob Kenney of "Dad, How Do I?", Shows Up when Needed Most13 Jul 202000:32:16

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Rob Kenney has become the “internet’s dad” with his “Dad, How Do I?” YouTube videos that have gone viral.  Rob began a channel of DIY videos during quarantine that has captured millions of hearts in the process. Rob’s dad left the family when he was 14, so he missed out on learning how to do the things he now shows viewers. He started his videos thinking he could help 30-40 people learn every day tasks, listen in and hear why it ended up being so much more.   Podcast community, photos & show notes at:
https://www.facebook.com/ImDyingToTellYouPodcast/.
Connect: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en and https://twitter.com/LorrisPodcast

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Moors & McCumber on the Unifying Power of Music21 Jun 202000:40:03

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Listen in as I chat with, Moors & McCumber two gifted singer- songwriters and multi-instrumentalists, a modern day version of Crosby, Stills & Nash.  James Moors and Kort McCumber have been cultivating their wide-ranging musical influences in songs that delve into love and life.  Hear their own inspiration for getting into music and how the duo came together.  We talk about how their past music is now so relevant to the current state of our world.  Join in on this backstage conversation.
Podcast community, photos & show notes at:
https://www.facebook.com/ImDyingToTellYouPodcast/.
Connect: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en and https://twitter.com/LorrisPodcast

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Wreck Someone with Good!06 Jun 202000:29:02

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Meet Kevin VanAmburg who tipped an essential worker at Tim Horton's $900 and is out to wreck others with Good!  A video of his random act of kindness went viral and as soon as I saw it, I wanted to meet him.  I'm so happy I did as he has one big ole' heart that is inspiring me and many others.  Kevin is one heck of a nice guy from Michigan with an energizing message for all.  Come join our podcast community and see photos & show notes at: https://www.facebook.com/ImDyingToTellYouPodcast/.
Stay updated on Instagram: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en

Thanks for listening.  Hugs, Lorri

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Gratitude Changes Everything - Even Living with ALS26 May 202000:36:24

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Dr. Shelly Hoover was diagnosed in 2013 with ALS, a terminal illness, yet has been living in joy and gratitude ever since.  Shelly has an incredible message that everyone should hear.  She recently wrote her first novel, Timeless Sisters, by only using her eyes.  Although her body is paralyzed, her spirit is soaring as she thrives on encouraging others to live their best life.  I even think you'll live your life a little differently after hearing Shelly.
 If you liked this episode, please leave a review on your favorite podcast app.  This will help others find it.  Thanks for listening!  Hugs, Lorri 

Photos and show notes here: https://www.ImDyingToTellYouPodcast.com . Stay updated on Instagram: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en

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Inspiration from 6 ALS Warriors19 May 202000:31:34

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Hear inspiration from six who range from 33-55 years old and are all living with ALS, a rare and fatal disease.  This unique BONUS episode is a must-listen.  ALS (Amyotrophic Lateral Sclerosis) also known as Lou Gehrig's disease or the "Ice Bucket Challenge" disease is fatal with no cure.  In honor of May being ALS Awareness Month, I chat with six others who share what they want others to know about living with ALS and what inspires them during the fight of their lives.  Please listen in and share to help create awareness.  Hugs, Lorri   Photos and shownotes here: https://www.facebook.com/ImDyingToTellYouPodcast/. Follow on Instagram: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en

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Brian Wallach: Behind the I AM ALS Movement11 May 202000:40:11

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Talking with Brian Wallach, co-founder of I AM ALS.   This unique patient-led, patient-centric movement is working to find cures for ALS.  Brian Wallach has been living with ALS since 2017 and started the non-profit I AM ALS to empower patients to lead the fight to end ALS.  Hear how this father of 2 young daughters is leading this fast growing organization to not only cure ALS but to unlock critical breakthroughs that will help defeat Parkinson’s, Alzheimer’s, Frontotemporal Dementia, and beyond.  Please share this to bring hope to all. 
Episode show notes & photos here:@
https://www.facebook.com/ImDyingToTellYouPodcast/ and  http://www.ImDyingToTellYouPodcast.com.  Thanks for listening!  Hugs, Lorri

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Fashion, HOPE, ALS Reversals: All with Dr. Richard Bedlack15 Jan 202501:03:57

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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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Inside Cinderella's Closet … find LOVE and GRACE for our High School Girls27 Apr 202000:35:01

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Hear how one act of kindness led to a unique outreach for thousands of girls across the country.  I chat with Sara Mosteller, Director of Cinderella's Closet Southwest Ohio.   Learn why Cinderella's Closet provides a formal gown, shoes and jewelry all FREE of charge.  Sara tells how just saying "YES" has allowed her to lead a growing Cinderella's Closet chapter for over 10 years.  Episode shownotes & photos here:@
https://www.facebook.com/ImDyingToTellYouPodcast/ and  http://www.ImDyingToTellYouPodcast.com.  Thx for listening.


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Pastor Battling Depression Preaches "It's OK not to be OK" 07 Apr 202000:31:38

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Hear how speaking up and embracing a community can provide healing for depression.  Pastor Shawn Spradling of Center Pointe Christian Church shares his discovery with depression and how he was prompted to speak publicly about his struggles. If you think someone might be encouraged by this episode, please leave a review and mention Episode #4.  This will help bring others to it.  Thank you.  Come join us in our podcast group on Facebook:
https://www.facebook.com/ImDyingToTellYouPodcast/or connect more at: http://www.ImDyingToTellYouPodcast.com


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4 Secrets to Live with More Joy 23 Mar 202000:22:22

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Learn 4 secrets on how to ditch stress and live with more joy even when things are hectic and less than perfect.  I interview Monica Scalf, the founder of The Work Well Group and Crazy Grateful who shares simple shifts that don’t require a ton of time, energy and effort.  Come join us in our podcast group on Facebook:
https://www.facebook.com/ImDyingToTellYouPodcast/  and share how you are finding joy. Thank you for listening.  Connect more: http://www.ImDyingToTellYouPodcast.com

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Battling ALS with a SMILE09 Mar 202000:34:32

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Witness how the power of a smile can change your outlook on life, while living with a fatal disease or any other struggle.  I sit down with Smilin' Paul Rinderknecht who shares precious life advice while battling ALS.  Grateful to have this raw inspiration to share as he passed unexpectedly just 3 weeks after. Paul's wife, Leslie has offered to join my Podcast Community Group where you can interact with her, ask about caring for someone with ALS, how to talk to young children about a parent's terminal illness or simply show support. I invite you to join this special group on Facebook:
https://www.facebook.com/ImDyingToTellYouPodcast/  Thank you for listening.
 
To connect more: Visit: http://www.ImDyingToTellYouPodcast.com

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Why? ... I'm Dying To Tell You09 Mar 202000:21:00

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In this episode I'll be sharing my motivation for creating this podcast, what ALS is and how I went from being healthy and active to living with a fatal disease.  I'm excited to find & share stories of inspiration with you.  I'm offering an opportunity for you to continue the conversation after each episode.  Please join me in my Podcast Community Group on Facebook: https://www.facebook.com/ImDyingToTellYouPodcast/
There you can interact with guests, ask questions, give suggestions about episode topics or simply encourage others.  Thanks for joining me on this journey.

To connect more: Visit: http://www.ImDyingToTellYouPodcast.com

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An Introduction26 Feb 202000:03:40

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I’ve created this podcast to find & share stories of inspiration, from simply encouraging to truly extraordinary in hopes of inspiring you.  This intro hosts a preview of the first four episodes featuring guests with their inspiring messages. Please join me in my Podcast Community Group on Facebook Page @ https://www.facebook.com/ImDyingToTellYouPodcast/
There you can interact with guests, ask questions, give suggestions about episode topics or simply encourage others.  Thanks for being here.

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Facing ALS with Resilience: Johnny Rodriguez's Inspiring Journey12 Dec 202400:54:36

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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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"Clayton Rakes" - Two Siblings’ Mission to Honor Their Dad and Fight ALS25 Nov 202400:37:10

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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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Animated Film, LUKi & the Lights: Helping Children Understand ALS/MND30 Oct 202400:53:00

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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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Episode 100: A Chat with 100-Year-Old ​Mildred Kirschenbaum01 Oct 202400:43:26

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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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Broadway's Aaron Lazar on Making the Impossible, Possible ... Even with ALS11 Sep 202401:00:23

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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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Zac Brown Band's John Driskell Hopkins: An Update on ALS, Life and Music06 Aug 202401:01:17

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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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Goode and Faithful Servant: A Chat with Kerry Goode 09 Jul 202400:31:26

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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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Could it be ALS? - Bob Scannell on ALS Misdiagnosis11 Jun 202400:43:05

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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: alspromptdx@gmail.com

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Veterans, ALS and the Will to Fight!11 Nov 202500:47:34

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This 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, Lorri

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“Staying Loudly” - Sam’s Positive Mindset with ALS07 May 202400:55:46

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In 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 adversity.  Sam shares her heart & experiences through her blog which can be read here:
https://stayingloudly.wordpress.com/. Thank you for listening & sharing with a friend. Hugs, Lorri 

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37-year-old Sara Bennett: Life, Death & Parenting with ALS17 Apr 202400:53:41

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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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LOVE & SUPPORT from ALS Family of Faith13 Mar 202400:53:11

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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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20 Years Living with ALS: A Special Q&A with My Sons Co-Hosting13 Feb 202401:11:43

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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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Rebuilding Together After ALS Loss: Juliet Taylor & Tim Abeska 09 Jan 202400:45:33

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In 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 what advice they have for others who are experiencing loss.  It's incredible that both Juliet & Tim have jumped back in to the ALS community as key advocates.  Together, they are the co-chairs of the I AM ALS Community Outreach Team, which helps bring others into our fight for a cure.  Juliet writes a beautiful column for ALS News Today. Listen in to this hopeful chat and share with a friend.  Thanks for listening.  Hugs, Lorri 

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Community Building Amidst ALS: Karen (thekaregiver) & Tony Vick12 Dec 202300:52:53

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Here 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 caregivers and individuals grappling with illnesses like ALS.  Tune in to discover how they extend their reach and provide support through their engaging weekly LIVE sessions on Instagram @thekaregiver, where they update their journey, answer questions, and offer encouragement.  Both Tony & Karen are returning guests on this podcast.  We get an update on how Tony is doing and his thoughts on his positive perspective.  Tony also shares advice for other veterans living with ALS.  Listen in as I delve into the inspiring story of Tony and Karen Vick, demonstrating that even in the face of adversity, love, resilience, and community can thrive.  Thank you for listening in and sharing with a friend.  Hugs, Lorri



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How to Find Gratitude During Hard Times28 Nov 202300:42:21

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In 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 single day.  I also pass along some things to consider being grateful for even when life gets tough. I share some ways to stir up gratitude as well.  At the end of this episode, I talk about Giving Tuesday and how it provides a unique opportunity to express gratitude through acts of kindness and generosity.  I am incredibly grateful for each of you.  Thank you for being here and letting me share my thoughts with you.  Hugs, Lorri

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Amanda Stevens: Wife, Mom, Caregiver & Founder of AxeALS13 Nov 202300:49:56

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Here 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 their daughter.   Amanda and Eric have also been inspired to help others through their non profit called AxeALS Foundation.  Their mission is to raise awareness and funding for ALS treatments and clinical trials; to help ALS patients and their families live as full and normal lives as possible and to support ALS research. In this episode, Amanda shares her journey, motivation and updates on Eric and life with ALS.   Tune in for this sweet encouragement in the face of huge adversity.  Thank you for listening and sharing this episode with a friend.  Hugs, Lorri
AxeALS: https://axeals.org/

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Teen Actor Lance Alexander: "From Junk to Hunk"24 Oct 202300:45:39

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In 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 eliminating “junk” is acknowledging that transformations can require both mental and physical adjustments and applies to all areas of life, not just your size.  He shared that on this journey, he learned that mental transformations might be even more difficult than physical transformations.  Lance also witnessed that permanent change requires mental resilience and self-belief.  Especially for being just 18 years young, I am loving Lance's self awareness and heart to share his experience with others.  Listen in and meet my new friend, Lance.  Hugs, Lorri
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Radio Legend Jim Scott: Living Positively with ALS12 Oct 202300:44:44

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Here 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” with those that need it most.  We chat about his extraordinary radio career, community and love.  Jim is known as “Good Old Jim Scott” since he has given so much back to others.  Listen in & hear what this incredible 80 year old is “Dying To Tell You.”  Thanks for listening and sharing with a friend.  Hugs, Lorri
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Happy Hour with Her ALS Story and "Hop" of Zac Brown Band24 Sep 202500:59:45

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In 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, Lorri

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Military Veteran Kate Peters Battling the Enemy: ALS26 Sep 202300:44:22

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Here 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 experience, the connection between ALS & the military and her upcoming BIG adventure of traveling the world for a year with her young family.  Kate is considered a slow progresser with ALS, having symptoms for almost 6 years and still being fully independent and able to take care of her children.   She's been able to witness some blessings after being given a terminal diagnosis and shares some beautiful life advice that will encourage us all.   Thank you for listening in and sharing with a friend.  Hugs, Lorri
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"Hope Fights Back" - Andrea Peet & Meredith Atwood22 Aug 202300:48:15

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Here 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 within two to five years, Andrea experienced an unexpected spark that changes her outlook in the most magnificent way.  She set a goal to  become the first person with ALS to complete 50 marathons in 50 states.  In May 2022, she accomplished this goal with the 50th race in Prince of Wales Island, Alaska.  Andrea shares her journey in a recently released documentary,  "Go On Be Brave: The Drea Story."  Now, she's publishing a book on 9/5/23 "Hope Fights Back."  In this episode we catch up on it all, especially her inspiring memoir.  Hope Fights Back chronicles what happens when we choose to live instead of waiting to die. It is a "love letter to life" and a beautiful love story between Andrea and her husband, Dave.  Andrea’s message is awe-inspiring for everyone.  Listen in and share this incredible story with a friend.  Hugs, Lorri
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"Ask Me Anything" - Host Q & A on Life, Outlook & My Terminal Illness10 Aug 202300:39:09

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This episode is just me answering YOUR questions.  I had a lot of requests for this format again, so I asked listeners to send in questions about anything and I answered them here.  I'm so grateful for all the questions that came in, about life, perspective, my ALS longevity, family and advice.  I love that my listeners feel comfortable asking me anything.  This was a super special experience.  I hope you enjoy and share with a friend.
Connect: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en and https://twitter.com/LorrisPodcast

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Tackling Tough Conversations About ALS (Part 2/2)25 Jul 202300:42:10

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Here 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 their children and friends and even the toughest conversations yet.  Amy, Jim & Matt share their advice on how to go about having "tough talks" like these as well.  Thanks for listening in and sharing with a friend.  Hugs, Lorri  

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Tackling Tough Conversations About ALS (Part 1/2)12 Jul 202300:50:35

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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 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 the toughest conversations yet.  Amy, Jim & Matt share their advice on how to go about having "tough talks" like these as well.  Thanks for listening in and sharing with a friend.  Hugs, Lorri 
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Power of Positivity with Child Abuse Survivor, Courtney Cirabisi26 Jun 202300:44:27

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In 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 live a positive life after all she's been through.  She explains how she feels that she is meant to be where she is today.  I love her outlook and her strength and how she lives a full, rich life.  She has such a beautiful awareness and is using it to inspire others.  Courtney is on a mission to show others how strong your mind is when facing adversity.  She is an author at Push Living (PUSHLIVING.COM) an organization highlighting wheelchair lifestyle.  Thanks for listening in to our chat.  Stay connected on Instagram: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en  Hugs, Lorri  

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Q&A: Young Adults Living with ALS (Part 2/2)17 May 202300:46:21

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May 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 you find the strength day in and out to persevere and overcome fears, pain, negative emotions, etc.? "  "What's important now that wasn't before your diagnosis?"  "What makes you feel inspired or like your best self now?"  and "How are you dealing with the mental side of living with ALS."  Those are a few examples of questions they answer and generate a full conversation around.  Please consider sharing this episode to share their courageous spirits and to tell others about ALS.  Thank you. Hugs, Lorri  

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Q&A: Young Adults Living with ALS (Part1/2)09 May 202300:56:00

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In 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 hearts to answer your questions like, "Can you share about the moment you were diagnosed with ALS?"  "How do you find the strength day in and out to persevere and overcome fears, pain, negative emotions, etc.? "  "What's important now that wasn't before your diagnosis?"  "What makes you feel inspired or like your best self now?"  and "How are you dealing with the mental side of living with ALS."  Those are a few examples of questions they answer and generate a full conversation around.  Please consider sharing this episode to share their courageous spirits and to tell others about ALS.  Thank you. Hugs, Lorri  

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"The Wisdom of Morrie" with His Son Rob Schwartz24 Apr 202300:42:57

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On 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 diagnosed ALS.   Rob rediscovered this manuscript that Morrie wrote about staying vibrant and connected for life.  Morrie explores living and aging joyfully and creatively.  Later life can be filled with many challenges, but it can also be one of the most beautiful and rewarding passages in anyone's lifetime.  Morrie draws on his experiences as a social psychologist, teacher, father, friend, and sage to offer us a road map to navigate our futures.  I hope you'll listen in and hear more from Morrie all these years later.  Hugs, Lorri

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Zac Brown Band's John Driskell Hopkins & His Battle with ALS 11 Apr 202301:02:10

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 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, his start in music, how he became a part of the award winning Zac Brown Band and how he noticed something wasn’t right with his health on tour.  He shares intimate details about his thoughts right after diagnosis, telling his family, his daughters and more.  I chat with Jennifer about their foundation, Hop on a Cure.  John continues to perform and record with the Zac Brown Band as they are currently on tour. Thank you for listening and sharing with a friend.  Hugs, Lorri

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