Knowledgeable Experts | Real Stories | Amazing Courage
Join host Jess Stainbrook as he speaks with Dr. Tara Zier, the founder and president of The Stiff Person Syndrome Research Foundation , which she established in 2019 to raise awareness and funds for better treatments and a cure. Zier has built relationships with teams at the Stiff Person Syndrome Center at Johns Hopkins Medicine, the Mayo Clinic, and with patients around the world. In 2021, The SPSRF was selected to receive a three-year “Rare As One” grant from the Chan Zuckerberg Initiative. Zier and The SPSRF have been featured in The Washington Post, Voice of America, ABC News in Washington, and various media outlets worldwide. In 2017, Zier was forced to leave a twenty-year career in dentistry and stop the practice of karate (3rd degree black belt), due to Stiff Person Syndrome. She co-founded Smiles dental practice in Fairfax, Virginia and later joined a practice in Alexandria, Virginia. Zier is a graduate of the VCU School of Dentistry and Virginia Tech. Zier has two children, Kenna and Cameron.
Learn more at stiffperson.org
WHAT IS STIFF PERSON SYNDROME?
Stiff Person Syndrome (SPS) is a neurological disease with autoimmune features. Symptoms include muscle spasms, hyper-rigidity, debilitating pain, and chronic anxiety. Muscle spasms can be so violent they can dislocate joints and break bones. SPS is labeled as a rare disease, with one to two in a million people affected. But these numbers are likely higher due to misdiagnosis. It takes, on average, seven years to identify SPS. It is often mistaken as Multiple Sclerosis, Parkinson’s, Fibromyalgia, Psychosomatic illness, Anxiety, Phobia, and other autoimmune diseases. Patients can be disabled, wheelchair-bound, or bed-ridden, unable to work and care for themselves. The typical patient is a middle-aged female, but men and children can suffer from SPS as well.
12/2022 We are saddened to hear Celine Dion revealed she has been diagnosed with SPS. #celinedion
Join host Jess Stainbrook as he interviews Sue Stevenson. Sue is a Professionally Certified Coach, author of Impossible to Possible: Neurostrategies for Healing, Humor and a Reimagined Life, a sought after speaker and expert in Humor with a certificate in the science of happiness, a photographer, an advocate for humanizing the workplace, encouraging optimal brain health and fostering a Mindset of Choice, former International Human Resources Executive and more! “With so many suffering with disabilities that others cannot see, or invisible disabilities, I felt it was time to add my voice, to speak up and out.” Learn more about Sue HERE!
Terry Holyoak – PhD Candidate – Non-visible Disabilities
IDA Board Member, Kellie Pokrifka, show host is joined LIVE online with Terry Holyoak – PhD Candidate – Non-visible Disabilities.
Kate Nicholson – Civil Rights Attorney and ADA Expert
IDA Board Member, Kellie Pokrifka, show host is joined LIVE online with Kate Nicholson – Civil Rights Attorney and ADA Expert.
Rene Morales – Veteran and Trigeminal Neuralgia
IDA Board Member, Kellie Pokrifka, show host is joined LIVE online with Rene Morales – Veteran and Trigeminal Neuralgia.
Dennis O’Connor – Mental Health
IDA Board Member, Kellie Pokrifka, show host is joined LIVE online with Dennis O’Connor – Mental Health.
Mark Pimentel, MD – Irritable Bowel Syndrome
IDA Board Member, Kellie Pokrifka, show host is joined LIVE online with Mark Pimentel, MD – Irritable Bowel Syndrome.
Darcy Keith – The Queen of Survival
IDA Board Member, Kellie Pokrifka, show host is joined LIVE online with Darcy Keith – The Queen of Survival, award winning speaker and author! As the only unbuckled backseat survivor in her fatal car crash, Darcy, a 22-year-old Ball State senior, had to learn how to begin life again – mentally, physically, and emotionally..
Kimberly Warner – Director Producer – Unfixed, The Film
IDA Board Member, Kellie Pokrifka, show host is joined LIVE online with Kimberly Warner – Director Producer – Unfixed, The Film. Unfixed is a feature documentary about the stories of humans who are in various stages of learning to thrive with extreme, chronic, incurable conditions.
John Register – Paralympian, Veteran, Speaker, Author
IDA Founder and CEO, Wayne Connell, show host is joined LIVE online with John Register, Paralympian Silver Medalist, Veteran, Speaker, Author. John is a two-time Paralympian, Paralympic Games Silver Medalist, Persian Gulf War veteran, and TEDx Motivational Speaker. He embraced a “new normal” in becoming an amputee following a misstep over a hurdle while training for the 1996 Olympic Games, after participation in two consecutive Olympic trials.
John O’Leary – Live Inspired, ON FIRE and IN AWE
IDA Founder and CEO, Wayne Connell, show host is joined LIVE online with John O’Leary, Internationally Acclaimed Speaker, #1 Bestselling Author of On Fire: The 7 Choices to Ignite a Radically Inspired Life, and Host of the Top 20 Apple Podcast – Live Inspired.
Colonel Mikel Burroughs (Ret) – Veteran serving Veterans
IDA Board Member, Kellie Pokrifka, show host is joined LIVE online with Colonel Mikel Burroughs (Ret) sharing about the needs of Veterans through the eyes of a 37 year veteran himself. Mikel continues to give back through Victory for Veterans, National Veterans Transition Services, Inc aka REBOOT and RIP Medical Debt.
Nancy Sharp – Award winning Author, Speaker & Mom
IDA Board Member, Kellie Pokrifka, show host is joined LIVE online with Nancy Sharp, Award Winning Author, Speaker and Mom! Nancy shares about the loss of her husband and the birth of her amazing premature twins which provide a crucible of experiences for speaking on resiliency, grief, loss and hope.
Heidi Hanna, PhD – Brain Fitness and Stress Expert
IDA Founder and CEO, Wayne Connell, show host is joined LIVE online with Heidi Hanna, PhD, Brain Fitness and Stress Expert, professional speaker and NY Times bestselling author. Heidi recently created the Virtual First Responder Program in order to provide health and performance solutions to individuals and organizations during the COVID-19 outbreak experience.
IDA Board Member, Kellie Pokrifka, show host is joined LIVE online with Paula Vieillet, CEO of Employment Options and 2019 IDA Corporate Award recipient. Paula is a Nationally Certified Vocational Evaluator (CVE) who has been helping people living with disabilities and illness who are looking for employment and work from home positions for over 20 years.
IDA Board Member, Kellie Pokrifka, show host is joined LIVE online with Michele Rosenthal, My Trauma Coach, as she shares about her journey as a trauma and PTSD survivor and how she turned what she learned into an ability to help others find recovery, freedom and happiness.
LIVE with Biff Gore, ID Allstar and Contest on The Voice
Biff Gore is a powerful, soul singing Blues and R&B songwriter. His rich vocals landed him a spot on season 6 of The Voice with Team Usher after a 4 Chair Turn! His grueling blues sound moved him on to the top 8 with Team Blake. Listen to this powerhouse whose experiences of life fills his lyrics and rhythms with depth and weight. Dubbed The Ambassador of Soul by Adam Levine of Maroon 5 and Voice Coach, his rich vocals and down home guitar stylings are a superb treat. Biff Headlined IDA’s 2018 Gala and soon after became an ID Allstar. www.BiffGore.com
LIVE with Mary Dale Walters of Allsup on SSDI
Mary Dale Walters, SVP Allsup will be sharing about Allsup’s True Help Services. When a disability changes your way of life, choices can be overwhelming. Allsup can make one decision easier. When you need disability assistance, you need a Allsup True Help expert. Their specialized services get results for people with disabilities and the organizations that support them. Allsup provides help with Social Security Disability Insurance (SSDI) Benefits, Return to Work. Veterans Disability and Healthcare Assistance.
LIVE with Jaime Sanders, The Migraine Diva
Jaime is the author of the award-winning blog, The Migraine Diva. She is a member of the Coalition for Headache and Migraine Patients and Headache and Migraine Policy Forum. Jaime works with the Society for Women’s Health Research Interdisciplinary Migraine Network and sits on the Patient Leadership Council with the National Headache Foundation.
LIVE with Neurohumorist, Karyn Buxman
IDA CEO, Wayne Connell, show host is joined online with Karyn Buxman, RN, MSN, CSP, CPAE, Neurohumorist and Therapeutic Humor Expert, as we discuss the use of humor to cope with stressful times, whether it is COVID-19 or daily life with chronic illness!
Karyn Buxman is an international speaker, successful author, and neurohumorist (living at the intersection of the brain and humor). Karyn is a pioneer in the field of applied humor, starting with her masters thesis in graduate school and now continues her partnerships with leading neuroscientists.
LIVE with Amy Zellmer on Living with a TBI
Amy Zellmer is an award-winning author, keynote speaker, and TBI survivor. In 2014 she suffered a TBI from a fall on the ice which began her journey into advocacy work. She travels the country with her Yorkie, Pixxie, for her #NOTINVISIBLE awareness campaign. She also produces a podcast series — Faces of TBI, and hosts TBI TV on YouTube. Additionally, she co-created The Brain Health Online Summit with Dr. Jeremy Schmoe. She has a private Facebook group with almost 10,000 survivors, caregivers, and loved ones: Amy’s TBI Tribe | Concussion & Brain Injury. She is addicted to Starbucks coffee and loves all things glittery and pink!
LIVE with mindfulness expert, Holly Zajur
Holly Zajur, Yoga with Holly Z, discusses how to use mindfulness to get through life’s struggles. Holly is dedicated to sharing the benefits of yoga and mindfulness. She has studied these practices since 2009 and has been teaching since 2014. After graduating from the University of Virginia, Holly worked at a Yoga non-profit before starting her own company, Connect Wellness, where her work is dedicated to addressing stress and enhancing wellness through mindfulness and yoga in the workplace. Her website is: www.hollyzajur.com
LIVE with IDA Executive Director, Jess Stainbrook
In addition to joining IDA as our Executive Director 2018, Jess Stainbrook is an award wining film producer. He has received 8 Emmy Awards and 29 nominations and some of his media clients included MTV, ESPN, PBS, Discovery Channel, A&E. He has produced and directed major sports programming at events such as the Olympics, World Cup Skiing, Formula 1 Grand Prix, NASCAR, and the NFL Super Bowl. In late 2019, Jess launched IDA’s new Video Podcast, The Invisible No More® Show. Learn more about Jess HERE.
LIVE introducing Host, Kellie Pokrifka
Kellie is the Founder of the Concussion GamePlan, Invisible Disabilities Association Board Member, Co-Host of The Migraine World Summit, and Brain Injury Association of America Advisory Council Member. After suffering a traumatic brain injury, she has used her expertise to help others with similar conditions. Through her platform Concussion GamePlan, she helps bridge the gap between doctor and patient by disseminating information on symptoms, treatments, and co-morbid conditions: www.ConcussionGamePlan.com.
LIVE with Recording Artist, Pete Ohlin
IDA Special Guest and ID Allstar, Pete Ohlin! Pete is an incredible pianist whom many have raved his music has given them peace in difficult times, as well as calm for their anxiety or PTSD. Enjoy an evening of beautiful, LIVE music and sharing from the heart! www.PeteOhlin.com
LIVE with IDA CEO and Founder, Wayne Connell
Welcome to the first episode of InVisible InCourage LIVE Series during COVID-19. We will be introducing this series tonight and will be hosting special guests in the episodes to follow!