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Here 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 with this new reality.  Instead, they found a broken and failed system in which doctors told patients to “get their affairs in order and get ready to die.”   In this episode,  we talk about what happened next which was to do what they do best, put hope into action.  In 2019 they founded and built a patient-led revolution called I AM ALS, which is now  a community of over 50,000.  Next they completed a documentary film, No Ordinary Campaign.  The film follows them in real time as they fight for their own future while seeking to build a brighter one for thousands of others.   Recently they started, Synapticure,  a  telemedicine health care company for people living with ALS.  We catch up on all that and talk about how they do all this while living with a terminal illness and raising two daughters 5 and 7.  Today, there is no cure for ALS.   There are no treatments available to save lives.  As Brian puts it, you have two choices in a situation like this: curl up into a ball or act.  Listen in and hear how Brian and Sandra chose to act.  Thanks for sharing with a friend and leaving a review to help others join our fight to end ALS.  Hugs, Lorri

Here 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 learned from her mom, her choice of dying with dignity, the final days together and the work that Kylan is doing to continue making a difference with those living with ALS.  Kylan describes how her mama helped move mountains in the ALS community, vowing to leave the disease space better than she was forced into it so that future ALS families could benefit.  Sandy was a fierce ALS advocate who was highly respected and admired for her many contributions.   Even in her final days, Sandy started a new ALS Clinic Survey project with Pat Dolan and his Geospatial Hub team.  Kylan talks about how she jumped in to take her mom's baton and complete this project.   The ALS Clinic Survey is now available and provides a summary of the type and quality of care at each ALS clinic in the U.S. based on personal experiences of persons living with ALS.  I loved hearing about how Kylan is honoring her mama, Sandy.  As a mom, I was overwhelmed witnessing the positive impact that Sandy has had on her young daughter.  It's really made me pause.  This is a beautiful conversation.  Excited for you to hear it and share with another mama.  Hugs, Lorri

I 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 and Riding On Hope are just a few of the topics Scott wrote about in his intimate blog, Flex On ALS.  He  documented his personal experience by sharing his fears, regrets and what he wanted us to realize before it's too late.  Scott was a personal trainer, fitness advocate and young father of two daughters Iris, 3 and Hope, 1.   Scott and Jamie shared openly about life with a terminal illness, a young family and all that came with that.  Scott's writings on flexonals.com were intended to tell the truth about one man’s journey as he walks through the fire, but trust me they will inspire you as well.  Thank you for listening and sharing with a friend as we remember Scott.  Hugs, Lorri

So 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 a beautiful life perspective at a young age.  I hope you'll listen in and consider Michaels Desserts cookbook as a perfect holiday gift.   Some desserts recipes include Michael’s signature Freedom Fighter Cupcakes themed around figures from the history of civil rights and activism, as well as chapters on pies, tarts, cakes, snacks, and breads.  In the cookbook, you'll find each dessert features stunning photography, a list of ingredients, easy-to-do step-by-step instructions, and insightful tips from Michael that will make baking so much fun.   Michael's cookbook is for all ages, whether baking with kids or wanting to support Michael’s incredible mission.   I'm happy to introduce this "sweet" story to you.  Hugs, Lorri

In 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 Toby Cochran, Director and Adrian Ochoa, Producer who are leading a professional animation team to bring this film to life.   This film is both heartbreaking and inspiring  and will create ALS awareness and help children and adults understand what ALS is.   Sascha and Anjo wrote the story explaining the ALS disease with the help of the robot lights.   I love how the significance of the lights helps illustrate what ALS does.  This one of a kind short animation film will be made available for free on various media.  In this film we get to know the little robot Luka. We see how everyday tasks get harder and how they find out Luka is ill and what this means  for Luka’s life and environment. The film does not use words, but music, which makes it internationally applicable. I know this film will help so many families affected by this terminal disease.  Thank you for listening and sharing with a friend.  Hugs, Lorri

In 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 2020.  Now Michael is inspiring others who are going through health hardships.  Although Michael has some major challenges as a result of his treatments, he and his Mom are reaching out and helping so many others.  This beautiful momma/son team talk cancer, share how this tragedy changed their lives for the better, and gave them the courage to motivate and inspire others.  From the beginning, Michael and his mom have embraced sharing their experience and the lessons they have learned on social media through Instagram and TikTok.   Recently they tell their story in more depth, from both perspectives on their podcast , called Michael and Mom Talk Cancer.  Michael still has a long recovery road ahead, but is now in full remission and is sharing his miraculous journey to let others know they are loved and not alone.  Thank you for listening and sharing with a friend.  Hugs, Lorri

Here I am on location in Boston to bring you a behind the scenes look and my  weekend experience with the ALS Therapy Development Institute (ALS TDI) the world's foremost ALS drug discovery lab focused solely on ALS.  I was so grateful to tour the lab and attend the ALS TDI Summit which was a day of updates on the progress of ALS Research.  I wrapped up the weekend by attending their White Coat Affair gala which is a powerful evening that brings together and honors those living with ALS and remembers those whom we’ve lost.I catch up with 5 inspirational guests as we chat about the love, passion and hope behind the lab doors of this ALS research lab.  My conversations start directly in the lab as I talk to three scientists, Valerie Tassinari, Associate Scientist III, Anna, Gill, Associate Scientist III, Program Manager and Kyle Denton, Ph.D., Director, Cell Biology to find out what it means to work every day to discover treatments for those living with ALS.Then I talk to Kevin and Tessa Geraghty, who are living with ALS and also attending the ALS TDI weekend events and ask them what it means to visit the lab and meet others fighting the same terminal illness.Finally I chat with Carol Hamilton, Vice President of Development about unique ways to support their ALS research.  I loved witnessing the special bond between those who work in the lab and those who they are trying to save.  From all of us living with ALS, thank you for listening and sharing with a friend.  Hugs, Lorri

In this episode, I talk to Emma Terry who is a an ALS caregiver and a participant in the Miss America organization with her platform being ALS.    I catch up with this college student at the University of Alabama at Birmingham who is an ALS advocate, caregiver and granddaughter of ALS warrior, Stewart Simpson.   Emma recently turned 20 and her grandfather "Grandy" was diagnosed with ALS right before she was born.  Emma has a special relationship with her Grandy as all she's known is a lifetime of ALS with him.  Even as a full-time college student, she continues to be a caregiver for her Grandy.  He is 84 years old and his ALS has escalated to the point where he is confined to a hospital bed in his living room.  Although her Grandy cannot speak, he still has the ability to write.  So I'm so grateful that he was able to be a part of this chat as well.  You'll hear what advice he has after living with a terminal illness for 20 years.  Emma is also a participant in the Miss America organization and recently was Miss Alabama's Outstanding Teen.   Emma's platform is "Stomping Out ALS One Step at a Time" through which she raises awareness and funds to support the ALS fight.   She is also a member of I AM ALS Legislative Affairs Community Affairs team.   I love witnessing what life lessons Emma has learned through this incredibly difficult journey and the great love her and her Grandy have for each other.    Listen in and enjoy.  Hugs, Lorri

Hear my conversation with Lori Larson Heller as we talk about love, loss and moving forward instead of moving on.   Lori is a writer, speaker, fierce ALS advocate, and a widow.   She was in a season where life was going better than she could of planned.  Lori had a husband who was her best friend and soul mate, the absolute love of her life.  Then without warning, her plan changed.   On September 6, 2018 …  her husband Jim Heller was diagnosed with a terminal illness, ALS.  She left her successful commercial real estate investment career and became a full-time caregiver that day.   After losing her husband Jim to ALS, everything Lori was planning for her future vanished before her eyes, which is when she realized that we are not always in control.  Eventually Lori realized she had to make a choice.  Either stay stuck in a mindset of “why me”, or dig deep to see if she had the strength to shift her perspective for what the universe had in store.   We chat about "the old Lori" and "the new Lori."    She shares the superpower we all have: the ability to flip our script and view life through a different lens.   Lori shares that life doesn’t happen to us, it happens for us.  You'll hear how she's found acceptance of adversities, and discovered blessings in all the tough stuff.   I love how faithful she is and encourages others that we’re all here for a reason, and we have to find our purpose.  Be blessed, listen in and share with a friend.  Hugs, Lorri

Here I chat with ALS advocate and boa flouncer Katrina Byrd about her experience as a caregiver and what led her to write, "The Language of Forgiveness."  Katrina is a writer, playwright and ALS advocate, of Jackson, Mississippi.  She's an inspiration to many as she is a perfect example of courage, love, acceptance and forgiveness.  Katrina is legally blind and is no stranger to life obstacles of her own.  Yet, she cared for her partner, Dora Robertson who died from ALS just 76 days after being diagnosed with the disease.   Katrina also goes by "The Boa Flouncer" to help others going through a grief journey.  Fully aware of the devastating impacts of the journey of ALS, Katrina is honored to use her alter ego, "The Flouncer" which Dora helped to develop, to recognize others who advocate, educate and create ALS awareness.   She co-leads the Many Shades of ALS Community Team at I AM ALS which brings attention to and provides resources for the mental, physical and social health of people of color living with and impacted by ALS.   This time, we are flouncing our boat at you, Katrina.  Hugs, Lorri

This month is the 25th anniversary of the American classic book, "Tuesdays with Morrie."   Here I'm resharing my precious conversation with the author Mitch Albom.  We talk about love, faith, living and dying and the life lessons from his professor, Morrie Schwartz.  In this episode Mitch Albom shares the backstory of how he met his former professor Morrie Schwartz and how their relationship developed.  Mitch shared Morrie's life lessons in the best-selling memoir of all time, Tuesdays with Morrie.  Today, the book has sold 17 million copies in more than 50 editions around the world.  Mitch and I discuss some lessons that Morrie passed on during their weekly Tuesday visits.  Mitch also talks about his new novel, The Stranger In The Lifeboat.  Mitch Albom is a best-selling author, screenwriter, playwright, broadcaster and nationally syndicated columnist.   He has written seven number one New York Times bestsellers and his books have collectively sold more than 40 million copies.  Mitch has a generous heart as he has founded nine charities in his hometown of Detroit, and since 2010 he has operated the Have Faith Haiti Orphanage in Port-Au-Prince.  He lives with his wife Janine in Michigan.  Mitch is an inspiration to me for the beautiful books he writes and the love he pours out to others.  Thanks for listening and sharing with a friend.  Hugs, Lorri

Listen in to my conversation with David Richman who rode his bike 5,000 miles to explore the emotional journey of cancer.  After losing his sister to brain cancer, David was led to do something incredible that can inspire us all.  In this chat we talk about his intense and unique fundraiser in his sister's memory which was writing a book, Cycle of Lives.  This book is the result of 15 people’s stories, 5,000 miles and a journey through the emotional chaos of cancer.  David shares what motivated him to deeply explore  emotional journeys with cancer and the various traumas in their lives that affected their experience.  I love how he pulled it all together in his book where the stories are interwoven amongst the narrative of David’s solo 5,000-mile bike ride to go meet the book participants.   He shares some of the interconnected stories of people overcoming trauma.  David generously donates 100% of the net proceeds of the book to various cancer-related charities picked by the book participants or their survivors.  Cancer and other diseases come with so much physical impact.  I love seeing how David was able to create a safe space to talk about the tough emotions that come with it.   Thanks for listening.  Hugs, Lorri  

Listen in to my conversation with former Kansas City police officer, Sarah Nauser as we chat about  life and love while living with a terminal illness.  For eight years, Sarah earned high praise as a young, vibrant, rising star within the Kansas City Police Department.   She was living her dream until she was told she had ALS at the young age of 29.    Sarah, also a former body builder continues to be strong and determined.   In our conversation, we talked about life before ALS, her dream of being a police officer, her love for the Kansas City Royals, finding love after her diagnosis & even being a grandma at 33.  Sarah shares how she’s able to live a joyful life despite being diagnosed with a terminal illness.  Sarah has faced this devastating disease with a positive attitude and a resilience to focus on the good in her life.  "Your life can change in an instant like mine, don’t wait.  Be kind you never know the lives you may touch or the difference you can make," Sarah.  I hope you'll tune in to our chat and share it with a friend.  Thanks for listening.  Hugs, Lorri

Here I chat with  13 year old Samirah Horton, aka DJ Annie Red who uses her music to spread an anti-bullying message.   This award winning DJ  is also a  rapper, author, motivational speaker and anti-bullying activist from Brooklyn, New York.   From the age of 6, Samirah was picked on by her peers for the things that made her different—her raspier voice, her unique sense of style, and her unwavering confidence in herself.   The way she decided to fight back was to use her love of music and make sure other kids knew they weren’t alone.   Now she’s combining her musical talents and her antibullying platform to reach kids across the country.   As she DJ's to a variety of audiences, her favorites to play include hip-hop classics as well as her own antibullying anthem “No You Won’t Bully Me.”     Samirah has been recognized nationally as, Time Kid of the Year Finalist,  H&M Kids Role Model, the President's Award 2022 and more.  DJ Annie Red is having a blast being the Kid Resident DJ at the Brooklyn Nets, playing basketball and creating more ways to get her positive message out in the world.  I'm excited to share this amazing teen with you.  Listen in and meet, DJ Annie Red!  Hugs, Lorri

Here I catch up with David & Scott Lloyd, the brothers who created Racing for ALS.  Growing up, David and Scott loved racing and always talked about racing cars together.  As life happened, that desire got put to the side,  yet they kept putting off their dreams of auto racing.  That all changed in 2017, when David was diagnosed with ALS.  They realized quickly that their dream of someday buying cars and going racing for fun needed to happen now.   As they did that to simply have fun together, the generous people of the racing community quickly showed them that their racing could benefit more than just 2 brothers!   So now David and Scott are living their dream, even though ALS looms large in the rear view.   Racing for ALS has become a mission to raise funds and awareness for research and treatment of ALS.   So far, they have raised over $550.000 for ALS research.  This conversation is full of love, hope and the power of community.  Listen in and hear more.  Hugs, Lorri

In this episode, I chat with college student John Sexton, CEO and Founder of LifeDrive.  What started as an idea to help his dad who has ALS, John now creates adaptive technology for people with disabilities in order to give them more independence.   John is an upcoming senior at the University of Notre Dame and next drum major for the Notre Dame Band.  All while being a full-time student and band member,  John has been fighting for his father's independence.  John's father, Shawn is battling ALS and John has been working for over 4 years to give him back freedom that ALS has taken away.  John founded LifeDrive in 2021 after realizing he could invent ways to increase his dad's independence through wheelchair control as his strength was declining from ALS.  John and his dad started brainstorming ways to help people living with ALS extend their freedom of mobility and improve their quality of life.  As a result, they created EyeDrive, CareDrive, and VoiceDrive technologies. These solutions give all individuals who face mobility challenges alternative power wheelchair control options to regain their freedom.  Now John leads the LifeDrive team hoping to change the lives of those who are going through what he and his family have gone through.  Listen in and hear more about this father-son initiative.  Thanks for being here.  Hugs, Lorri

In honor of ALS Awareness Month, I asked the listeners, "What do you want to know about ALS & living with a terminal illness, but you're afraid to ask? "   More questions than I could imagine came in, so I asked a few friends living with ALS to help answer these tough questions.  So in this episode, I chat with  Sunny Brous, Kate Nycz, Maceo Carter and Kevin Rowland  as we go through each question submitted by listeners of this podcast.  Between us, our ALS diagnosis ages vary from 27- 47 and years living with ALS spans from 2 to 18 years, so it was great to have a wide range of experience to learn from.   I love the incredible support and curiosity for this unique episode.  We had such an amazing "round table" discussion, I decided to have 2 episodes so we could address all the questions.  In this part 2/2, we answer questions about mental strength, the grieving process, bucket list, sex/intimacy, thoughts on getting a trach, fears about what's to come, planning our own funeral and more.  If you missed part 1, we answered questions about fears of dying, mental health, survivor's guilt, what brings joy, boundaries and faith.  I hope you'll listen in and share with a friend to help us create more awareness of ALS.  Hugs, Lorri              Follow:          https://bit.ly/ImDyingToTellYouInstagram

In honor of ALS Awareness Month, I asked the listeners, "What do you want to know about ALS & living with a terminal illness, but you're afraid to ask? "   More questions than I could imagine came in, so I asked a few friends living with ALS to help answer these tough questions.  So in this episode, I chat with  Sunny Brous, Kate Nycz, Maceo Carter and Kevin Rowland  as we go through each question submitted by listeners of this podcast.  Between us, our ALS diagnosis ages vary from 27- 47 and years living with ALS spans from 2 to 18 years, so it was great to have a wide range of experience to learn from.   I love the incredible support and curiosity for this unique episode.  We had such an amazing "round table" discussion, I decided to have 2 episodes so we could address all the questions.  In this part 1/2, we answer questions about, fears of dying, mental health, survivor's guilt, what brings joy, boundaries, faith and more.  Part 2 will release as the next episode where we answer questions about mental strength, the grieving process, bucket list, sex/intimacy, thoughts on getting a trach, fears about what's to come and planning our own funeral.  I hope you'll listen in and share with a friend.  Hugs, LorriFollow:  https://bit.ly/ImDyingToTellYouInstagram

In this episode, I talk to Kim Nuxhall who created the Joe Nuxhall Miracle League so that everyone with any challenge can play the game of baseball.  Kim is the Chairman of the Board of Directors for the Joe Nuxhall Miracle League.  He joins the podcast to tell the powerful story and mission behind his father's legacy projects.  Kim's dad,  Joe Nuxhall, was the youngest player to ever pitch in the MLB at the ripe age of 15.  After his professional baseball career, Joe joined Marty Brennaman in the radio broadcast booth for the Cincinnati Reds, forming a dynamic 31-year duo that has gone unmatched to this day.  Joe brought energy, honesty, and an unapologetic joy to the radio that the entire Cincinnati community embraced. After his passing in 2007, Kim continued to follow their hearts and vision by creating the Joe Nuxhall Miracle League in 2012.  The Miracle League aims to revolutionize and set the standard for creating recreational and athletic opportunities for people with disabilities.  With two rubber baseball fields, a unique putt putt course, and more, the Joe Nuxhall Miracle League aims to provide "every individual with every challenge every chance to play the game of baseball."   Kim is living out his dad's legacy and is one of the most compassionate people I know.  Listen to our conversation and see how the Miracle League is so much more than baseball.  Thanks for listening and sharing with a friend.  Hugs, LorriFollow:  https://bit.ly/ImDyingToTellYouInstagram

Here I chat with Alison Burell and David Stanley, who each lost the love of their life way too early.  Alison's husband Cory Burell, passed away from ALS at the age of 35 after a valiant fight with familial ALS.   David's wife Angela Stanley, died from ALS at a young  50 years old.   Through the ALS community, Alison and David met after they each lost their person.   Without even searching for love, their friendship grew and love found them.   Now they are building a new life together and sharing their journey through their new podcast,  "I Lost My Person."   Through the podcast, they chat about widowhood, juggling family responsibilities, a long distance relationship and how they are chasing  joy.   Their primary theme in their episodes illustrate how it's possible to find love after loss and keep the person you've lost in your life as well.   It's heartwarming to see how love is working through these two.  I hope you'll listen in and share with a friend.   Hugs, LorriFollow:  https://bit.ly/ImDyingToTellYouInstagram