Podcast
Episode #1: Misdiagnosed! With guest Richard Sperry
In this episode, Our guest is Richard Sperry who was misdiagnosed with ALS. We will take you through Richard's long journey of getting diagnosed, how he got a new diagnosis of MMN, and what he has chosen to do with his knowledge from his experience.
Episode #2: ALS and the Wild Wild West of Medicine with Neil Olson
In this episode, Lisa and McFinn are joined by Neil Olson, whose father lost his battle to ALS in 2020. We will take you through Neil’s journey with his father, the treatments they tried, and what he has chosen to do with the knowledge from his experience. Neil also talks about his advocacy work and efforts with EverythingALS.
Episode #3: A Wife's Journey with ALS
In this episode, we are joined by Nadia Sethi, who lost her husband, Sundeep Sethi, to ALS in 2021. Nadia talks about Sundeep’s life with ALS and her role as caregiver. We will take you through Nadia’s journey with her husband, how she kept her spirits up, and her champions throughout this experience.
Episode #4: In Honor of My Dad, Dan Diaz
In this episode, Lisa and McFinn are joined by Sarah Diaz, who lost her father, Dan Diaz, to ALS in 2019. We will take you through Sarah’s journey with her father, what role she took on to help him, and how she honors him today. Sarah is currently studying to be a MD, PhD specializing in neurology.
Episode #5: My Journey to CEO of EverythingALS
In this episode, we are joined by the CEO and Founder of EverythingALS, Indu Navar. Indu is a Silicon Valley entrepreneur, investor, and an unstoppable force, who started EverythingALS after losing her husband, Peter Cohen, to ALS in 2019. We will take you through Indu’s journey with her husband, the treatments they tried, and her vision for changing the face of ALS.
Episode #6: A Brothers Legacy, A Sister’s Love
In this episode, we are joined by are joined by Deb Fabricatore, who has been an ALS advocate for many years after losing her younger brother, Johnny, to ALS. We will take you through Deb’s journey with her brother, how she helped him, and how she also kept her spirits up throughout his diagnosis. Deb also talks about how she got involved with EverythingALS and her contribution to our research project.
Episode #7: From Tragedy to Triumph with Lisa Deegan
In this episode, McFinn Lovere interviews Lisa Deegan, his co-host and team member at EverythingALS. Lisa lost her younger brother John Pecoraro to ALS in 2018. We will take you through Lisa’s journey with her brother, their challenges, and how she became an advocate for ALS. She talks about turning her tragedy into positive actions and now puts her energy into EverythingALS to help others.
Episode #8: Why ALS is Unresolved with Murgesh Navar
In this episode, Lisa and McFinn are joined by Murgesh Navar, who lost his brother-in-law, Peter Cohen, to ALS in 2019. Murgesh is a Silicon Valley entrepreneur, who is passionate about finding a cure for ALS after seeing his sister, Indu Navar, care for her husband and face the challenges of ALS.
Episode #9: ALS Reversal #42 with McFinn Lovere
In this episode, Lisa Deegan interviews her co-host McFinn Lovere, who experienced a rare ALS reversal. His case is documented and is studied as ALS reversal #42 at Duke University. We will take you through McFinn’s unique journey with ALS, how he recovered, and what his important role as an ALS advocate on the EverythingALS team means to him. McFinn shares details of his role dedicating his time to helping others throughout their ALS journey.
Episode #10: Biomarkers Lead To Results with Dr. Aria Anvar
In this episode, Lisa and McFinn are joined by Dr. Aria Anvar, who has been a practicing physician for more than 22+years. Dr. Anvar brings his expertise as Principal Investigator on the EverythingALS Digital Biomarker Voice research study. In this podcast, we will take you through our citizen-driven research to help develop biomarkers as well as commercialized tools for measuring clinical endpoints in ALS. The goal of this research is to expedite clinical trials and eliminate the need for placebos. Dr. Anvar shares his thoughts on changing the paradigm of the ALS condition.
Episode #11: Dying Out Loud with Dave Warnock and Bevin Jett
In this episode, Lisa and McFinn are joined by Dave Warnock, who was diagnosed with ALS in 2019 and his partner and caregiver, Bevin Jett. We will take you through Dave’s journey of getting a diagnosis and how he spends his limited energy living with ALS with Bevin by his side. Dave and Bevin open up about what they’ve learned and the important role as a caretaker that Bevin plays in Dave’s life. Dave and Bevin also share their advocacy work with EverythingALS, and the importance of connecting with others in this journey.
Episode #12: Community and ALS with Shea Harden
In this episode, Lisa and McFinn are joined by Shea Harden who is an amazing ALS advocate. We will take you through Shea’s journey with her younger brother, Graham, who just recently passed away from ALS. Shea was instrumental in helping her brother by fundraising, getting disability benefits, finding qualified medical care, and working through the tracheotomy process. Shea opens up about the importance of community, and how to not be afraid of asking for help.
Episode #13: Fashionably Fighting ALS with Dr. Richard Bedlack
In this episode, McFinn and Lisa are joined by a world renowned neurologist, Dr. Richard Bedlack, professor of neurology at Duke University and director of the Duke ALS Clinic. In his more than 23 years of experience, he has seen over 3,000 patients living with ALS. He is also well known for creating the Duke ALS Clinic in 2001.
Episode #14: Stories and Innovation in ALS: Audio Visual Assessments for ALS with David Suendermann-Oeft
In this episode, Lisa and McFinn are joined by David Suendermann-Oeft, founder and CEO of Modality.a.i. Modality.ai has developed a conversational software program that can be used remotely by anyone with a computing device that produces accurate metrics of facial and speech behaviors that are predictive of neurological diseases like ALS. Modality is paving the way for more efficient, effective, less costly clinical trials.
Episode #15: Passion, Perseverance, and Advocacy with Austen Eadie-Friedmann
In this episode, Lisa and McFinn are joined by Austen Eadie-Friedmann, who -- still only in his 30s -- got diagnosed with ALS in 2019. We will take you through his long journey to get diagnosed, his daily challenges, and how he feels the drug development paradigm needs to be changed. He also talks about treatments and the need for access to world-class healthcare for patients.
Episode #16: Keep On Ticking with Maggie and Dr. Hira Ahluwalia
In this episode, Lisa and McFinn are joined by Dr. Hira Ahluwalia and his wife, Maggie. Hira talks about his journey with ALS, how it took 3.5 years to get a diagnosis, and what he thinks might have contributed to getting this disease.
Episode #17: My Dedication to ALS with Dr. Merit Cudkowicz.
In this episode, Lisa and McFinn are joined by Dr. Merit Cudkowicz who has over 25+ years working in ALS. Dr. Cudkowicz is the Chief of the Massachusetts General Hospital Neurology Service, Director, Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and the Julieanne Dorn Professor of Neurology at Harvard Medical School in Boston.
Episode #18: I can’t Look Away with Allison Bulat.
In this episode, Lisa and McFinn are joined by Allison Bulat who lost her first husband, Jeff Pogmiller, to a fast progressing bulbar onset of ALS.
We will take you through Allison’s journey along Jeff’s side as his primary caregiver and also her advocacy efforts and how she has not turned away from helping others with this devastating disease.
Episode #19: Detoxification & Biochemical Resilience with Dr. Shade
In this episode, Lisa and McFinn are joined by Dr. Christopher Shade, who is the CEO and Founder of Quicksilver Scientific.
We will take you through what Dr. Shade and Quicksilver Scientific have created to help rid the body and mind of toxins that impair mind and body function. Dr. Shade will walk us through his solutions on restoring a balanced system to help you get rid of toxins and attain a state of wellbeing.
Episode #20: ALS has not Defined Us with Lori and Brian Andre.
In this episode, Lisa and McFinn are joined by Lori and Brian Andre. Brian has slow progressing ALS, he was diagnosed in 2016 after 2 years of symptoms. They have been married for 40 years and are huge assets to the ALS community, working on community outreach and education for clinical trials with I AM ALS.
Episode #21: Pursuit of Happiness with Mayuri and Mayank Saxena
In this episode, Lisa and McFinn are joined by Mayuri and Mayank Saxena. Mayuri was diagnosed with ALS 2.5 years after the onset of symptoms, at the young age of 32. Mayuri is joined by her brother Mayank, who has been instrumental throughout her journey even though they are bi-coastal.
Episode #22: Nutrition Essentials for ALS
In this episode, Lisa and McFinn are joined by Coco Newton, MPH, RD, CNS who is a Registered Dietitian & Certified Nutrition Specialist. Coco works with each individual, helping them to understand their unique circumstances, belief systems, personal/spiritual strengths and challenges. She will tailor a program that more realistically addresses your nutritional needs and expectations. Coco has a lot of passion in working with many people diagnosed with ALS over the years to help them with their nutritional needs.
Episode #23: Not Going Quietly with Ady Barkan and Rachael King
In this episode, Lisa and McFinn are joined by American healthcare activist and lawyer Ady Barkan. Ady was diagnosed with ALS shortly after the birth of his son Carl, at the young age of 32. He joins us with his wife Rachael King by his side. Rachael is the mother to their two young children, Carl and Willow. She is a professor at UCSB and manages to balance motherhood, working, and being the pillar of strength for their family.
Episode #24: Her ALS Story
In this episode, Lisa and McFinn are joined by guests Leah Stavenhagen, Sunny Brous and Macey Hoaglund, who all have something in common - they were diagnosed with ALS in their late 20’s. They part of Her ALS Story, which is a group of women all diagnosed with ALS before their 35th birthdays.
