Creating an Advocacy Movement with #NotJustFatigue’s Elizabeth Ansell: Part Two

In this two-part episode of the Brain & Life Podcast, co-host Dr. Katy Peters is joined by Elizabeth Ansell, founder and director of #NotJustFatigue. #NotJustFatigue is a nonprofit organization shining a light on myalgic encephalomyelitis/chronic fatigue syndrome, also known as ME/CFS, and educates patients, clinicians, and health organizations about the condition. Elizabeth shares how raising awareness, and furthering research really improves the everyday lives of people living with ME/CFS. Dr. Peters is then joined by Dr. W. Ian Lipkin, who is known internationally for his research and is the John Snow Professor of Epidemiology, Professor of Neurology, and Professor of Pathology and Cell Biology at Columbia University Irving Medical Center, Mailman School of Public Health. Dr. Lipkin discusses what’s next in ME/CFS research and what the future could hold.   Additional Resources #NotJustFatigue How to Fight Fatigue Understanding the Impact of Invisible Illnesses on Daily Life How Families Are Leading the Charge in Rare Disease Advocacy   Other Brain & Life Podcast Episodes on Similar Topics Rare Thoughts on a Rarer Neurologic Condition Shedding Light and Love on a Rare Genetic Condition with Deborah Vauclare Neurofibromatosis Advocacy and Community Building with the Gilbert Family Foundation We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? Record a voicemail at 612-928-6206 Email us at [email protected]   Social Media: Elizabeth Ansell @notjustfatigue; Dr. W. Ian Lipkin @columbiapublichealth Guests: Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this two-part episode of the Brain & Life Podcast, co-host Dr. Katy Peters is joined by Elizabeth Ansell, founder and director of #NotJustFatigue. #NotJustFatigue is a nonprofit organization shining a light on myalgic encephalomyelitis/chronic fatigue syndrome, also known as ME/CFS, and educates patients, clinicians, and health organizations about the condition. Elizabeth shares her diagnosis journey and explains why education around ME/CFS is so vital. Dr. Peters is then joined by Dr. W. Ian Lipkin, who is known internationally for his research and is the John Snow Professor of Epidemiology, Professor of Neurology, and Professor of Pathology and Cell Biology at Columbia University Irving Medical Center, Mailman School of Public Health. Dr. Lipkin explains what ME/CFS is and how it differs from other conditions with similar symptoms, like long COVID. Make sure to tune in next week for part two to hear about what’s next in ME/CFS research and the importance of care partners.   Additional Resources #NotJustFatigue How to Fight Fatigue Understanding the Impact of Invisible Illnesses on Daily Life How Families Are Leading the Charge in Rare Disease Advocacy   Other Brain & Life Podcast Episodes on Similar Topics Rare Thoughts on a Rarer Neurologic Condition Shedding Light and Love on a Rare Genetic Condition with Deborah Vauclare Neurofibromatosis Advocacy and Community Building with the Gilbert Family Foundation   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? Record a voicemail at 612-928-6206 Email us at [email protected]   Social Media: Elizabeth Ansell @notjustfatigue; Dr. W. Ian Lipkin @columbiapublichealth Guests: Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this episode of the Brain & Life Podcast, co-host Dr. Daniel Correa is joined by Phil Rosenthal. Phil is the award-winning creator, executive producer, and host of “Somebody Feed Phil,” as well as a two-time New York Times Best Selling Author, soon-to-be restaurant owner, and cared for his mother during her journey with Amyotrophic lateral sclerosis (ALS). Phil shares about his mother’s journey and how his family worked with doctors to prioritize her needs. Dr. Correa is also joined by Dr. Bjorn E. Oskarsson, a neurologist at Mayo Clinic in Jacksonville, Florida who specializes in ALS. Dr. Oskarsson explains ALS, how it can affect people in differing ways, and what treatment options typically look like.   Additional Resources Max and Helen’s: A Neighborhood Diner Honoring Phil Rosenthal’s Parents A Marathoner on a Quest to End ALS Tips on How to Choose and Pay for In-Home Health Care When is Palliative Care Appropriate?   Other Brain & Life Podcast Episodes on Similar Topics Making the Years Count with Brooke Eby, Influencer Living with ALS Finding Strength in ALS Advocacy with Podcaster Lorri Carey Aaron Lazar on His ALS Journey and the Impossible Dream   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? Record a voicemail at 612-928-6206 Email us at [email protected]   Social Media: Phil Rosenthal @phil.rosenthal; Dr. Bjorn E. Oskarsson @mayoclinic.flneuro Guests: Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this episode of the Brain & Life Podcast, your spinal cord injury (SCI) questions are getting answered! Co-host Dr. Daniel Correa is joined by Dr. Shelly Hsieh, attending physician and Assistant Professor, Physical Medicine and Rehabilitation at Montefiore Einstein, and they discuss injury types and classification, how progress is tracked, assistive devices that can help improve daily life, how to manage the emotional toll that a SCI can take, and the importance of advocacy and making your voice heard.   Additional Resources What is Spinal Cord Injury? Complete vs Incomplete Spinal Cord Injury Disability Products and Services Guide SCI Assistive Technology United Spinal Advocacy Program   Other Brain & Life Episodes on This Topic “Roll with Cole & Charisma" On Building a Life Together as an Interabled Couple How Disability Advocate Wesley Hamilton Became Empowered by Adversity   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? Record a voicemail at 612-928-6206 Email us at [email protected]   Social Media: Guests:  Dr. Shelly Hsieh @MontefioreHealthSystem Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this episode of the Brain & Life Podcast, co-host Dr. Katy Peters is joined by actors Micah Fowler, Kelsey Cardona, and Phoebe Rae Taylor. Micah shares how his Cerebral Palsy (CP) diagnosis differs from the character who he played on ABC’s Speechless and his sister Kelsey explains the benefits of this representation that she’s seen in real-time. Phoebe Rae then explains how she got her role in Disney’s Out of my Mind and how acting has inspired her for the future. Dr. Peters is then joined by Dr. Ann Tilton, a Professor of Neurology and Pediatrics at LSU Health New Orleans with more than 30 years of experience in the field. Dr. Tilton explains what CP is, how it can differ from person to person, and what advancements the community can look forward to.   Additional Resources What is Cerebral Palsy?  Biking Gives Freedom to a Teen with Cerebral Palsy Becky Dilworth Skied and Raised a Family Despite Cerebral Palsy   Other Brain & Life Podcast Episodes on Similar Topics Scoring Goals with CP Soccer’s Shea Hammond Gavin McHugh is Building an Acting Career and a Community with Cerebral Palsy RJ Mitte on Living Confidently with Cerebral Palsy   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? Record a voicemail at 612-928-6206 Email us at [email protected]   Social Media: Guests: Micah Fowler @micahdfowler; Kelsey Cardona @thekelseycardona; Phoebe Rae Taylor @phoeberaetaylorx Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this week’s episode, Brain & Life Podcast hosts Dr. Daniel Correa and Dr. Katy Peters discuss some of their favorite articles in the most recent edition of Brain & Life Magazine. They discuss how families are leading the charge in rare disease advocacy, how people living with neurologic conditions can be prepared for natural disasters, and what brain fog really is. If you would like to read these articles and more, be sure to subscribe to Brain & Life Magazine or read the issue online!   Brain & Life Articles Mentioned How a Brain Injury Survivor is Offering Others Help and Hope How Families Are Leading the Charge in Rare Disease Advocacy Natural Disasters Can Be More Dangerous for People with Neurological Conditions—Here’s How You Can Prepare What Is Brain Fog?   Other Brain & Life Podcast Episodes on These Topics Actor Cameron Boyce’s Legacy and Raising Awareness About SUDEP Raising Awareness for a Rare Cancer with Love4Lucas President Hide Harashima Advocacy and Assistive Technology with Former Representative Jennifer Wexton Actress Yvette Nicole Brown Discusses the Caregiving Journey We Are Brave Together with Jessica Patay   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? ·       Record a voicemail at 612-928-6206 ·       Email us at [email protected]   Social Media:   Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this episode of the Brain & Life Podcast, co-host Dr. Daniel Correa is joined by dedicated public servant and former U.S. Representative for Virginia's 10th congressional district Jennifer Wexton. She shares about her journey with progressive supranuclear palsy (PSP) and what she has learned from the PSP community. She also discusses the importance of advocacy and the use of assistive technology, including the AI-generated voice she uses during this episode. Dr. Correa is then joined by Dr. Janis Miyasaki, a movement disorders specialist who practices at the University of Alberta in Canada where she is the head of the department of clinical neuroscience and co-directs the Neuropalliative Care Clinic. Dr. Miyasaki explains PSP and discusses what the care experience may look like for someone living with PSP and their loved ones as they search for comfort and peace. Interested in getting involved with advocacy? Learn more here: https://www.brainandlife.org/get-involved/advocate/     Additional Resources Former Representative Jennifer Wexton Breaks Barriers with AI-Generated Voice Amid PSP Battle The Research Pipeline for Progressive Supranuclear Palsy CurePSP   Other Brain & Life Podcast Episodes on Similar Topics Family Stories: Diagnosing a Neurodegenerative Condition The Future of Caregiving with Kat McGowan Still Standing with Staff Sergeant John Kriesel   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? Record a voicemail at 612-928-6206 Email us at [email protected]   Social Media: Guests: Jennifer Wexton @repwexton; Dr. Janis Miyasaki @ualberta Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this episode of the Brain & Life Podcast, co-host Dr. Daniel Correa is joined by songwriter, storyteller, and multi-instrumentalist Greta Morgan. Greta shares her journey being diagnosed with spasmodic dysphonia and how it has changed every aspect of her life, leading her to write her memoir, The Lost Voice. Dr. Correa is then joined by Dr. Brent Richardson, board certified Otolaryngologist (Ear, Nose, and Throat physician) with a specialty in Laryngology at The Bastian Voice Institute. Dr. Richardson explains what spasmodic dysphonia is, how it’s diagnosed and treated, and different factors that may affect each person’s experience with the condition.   This episode features music from throughout Greta Morgan’s musical career. To hear more, visit https://www.gretamorganmusic.com/.   Additional Resources The Lost Voice: A Memoir Remaining Positive After a Spasmodic Dysphonia Diagnosis Dysphonia International   Other Brain & Life Podcast Episodes on Similar Topics Billy McLaughlin on Life as a Musician with Focal Dystonia Rogers Hartmann on Beating Dystonia   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? Record a voicemail at 612-928-6206 Email us at [email protected]   Social Media: Guests: Greta Morgan @gretamorgan; Dr. Brent Richardson @bastianvoiceinstitute Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this episode of the Brain & Life Podcast, co-host Dr. Katy Peters is joined by disability advocate, content creator, and speaker with a focus on accessibility, equity, and innovation in spinal cord injury research Jessie Owen. Jessie is a quadriplegic mother of twins and shares some candid insights on life, parenting, and navigating systemic barriers with humor and authenticity with Dr. Peters. Dr. Peters is then joined by Dr. Shelly Hsieh, attending physician and Assistant Professor, Physical Medicine and Rehabilitation at Montefiore Einstein. Dr. Hsieh’s discusses outpatient care for people living with spinal cord injury and related disorders and shares some exciting upcoming treatment options.   Additional Resources Jessie’s Story What is Spinal Cord Injury? A Spinal Cord Injury Survivor Opens an Affordable Rehab Center   Other Brain & Life Podcast Episodes on This Topic “Roll with Cole & Charisma" On Building a Life Together as an Interabled Couple How Disability Advocate Wesley Hamilton Became Empowered by Adversity   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? Record a voicemail at 612-928-6206   Social Media: Guests: Jessie Owen @itswheelyjess; Dr. Shelly Hsieh @montefiorehealthsystem Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this episode of the Brain & Life Podcast, co-host Dr. Katy Peters is joined by Emmy-nominated actress, writer, producer and host Yvette Nicole Brown. She shares about her experiences as a caregiver for her father who has Alzheimer’s disease. Yvette dives into the connection she found with her father throughout this journey and discusses why she started her podcast, Squeezed, about these experiences. Dr. Peters is then joined by Dr. Francesca Falzarano, assistant professor of gerontology at University of Southern California. Dr. Falzarano is a developmental psychologist whose research focuses on the intersection of technology and dementia care, with a particular emphasis on enhancing the mental health and well-being of family caregivers. In her conversation with Dr. Peters, she shares what she believes the future of caregiving should look like and how technology can help get it there.   Additional Resources Squeezed with Yvette Nicole Brown Falzarano Family Caregiving Lab Expert Tips to Embrace Caregiving with Confidence and Overcome Self-Doubt Patients and Their Loved Ones Find New Roles as Advocates After Diagnoses   Other Brain & Life Podcast Episodes on This Topic Finding Community in Caregiving with Kitty Norton Resiliency and Caregiving with Janet Fanaki Actors Oscar Nuñez and Ursula Whittaker on Caring for Loved Ones with Dementia We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? Record a voicemail at 612-928-6206 Email us at [email protected]   Social Media: Guests: Yvette Nicole Brown @yvettenicolebrown; Dr. Francesca Falzarano @ffcaregivinglab Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD