Energy in Action by MitoAction

When your child is diagnosed with a rare disease, everyday family life can change in ways you never imagined. In this episode, Marcy sits down with Chris Freeman, a father living in Germany whose 14-year-old son was diagnosed with POLG-related mitochondrial disease after experiencing severe seizures and other unexplained neurological symptoms. Chris shares the emotional journey from his son's first hospitalization to finally receiving a diagnosis, and the challenges of helping a teenager navigate school, friendships, fatigue, and the desire to live a normal life while managing an unpredictable condition. He also opens up about how POLG has reshaped his family's routines, relationships, and priorities, including the often-overlooked impact on siblings and caregivers. Chris discusses the importance of connecting with other families, advocating for better treatments, and participating in the November 2026 POLG Patient-Focused Drug Development (PFDD) meeting, where patient and caregiver experiences can help inform the FDA's understanding of the disease and future treatment development.

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After losing three family members to POLG-related mitochondrial disease, Heather Schichtel has made it her mission to help create a better future for patients and families facing the same diagnosis. In this episode, Marcy sits down with Heather to share the deeply personal stories of her children, Jack and Samantha, and her brother Ryan, whose experiences reveal just how differently POLG can affect people, from early childhood to adulthood. Heather discusses the importance of genetic testing, the challenges adult patients face in accessing specialized care, and why patient voices must help shape clinical trials and future treatments. She also shares how her family turned grief into action through Summit for Samantha, a fundraising initiative that has helped raise approximately $2 million for mitochondrial care and research at Children's Hospital Colorado. Through extraordinary loss and unwavering advocacy, Heather's story is a powerful reminder of what families can accomplish when they come together to fight for progress.

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Living with mitochondrial disease can mean constantly adjusting to what your body can and can’t do, and learning how to move forward when those abilities change. In this episode, Marcy is joined by Lacynda Harris to share her long road to a mitochondrial disease diagnosis and the “carry on” mentality that has helped her through it. Lacynda opens up about years of unexplained symptoms, being told what she was experiencing was psychological, and eventually discovering an RYR1 mutation after genetic testing. She shares how faith, family, humor, creativity, and support have helped her navigate the grief that can come with chronic illness—including her unique practice of “having services” for the abilities she has lost so she can acknowledge what has changed and keep moving forward. From learning to accept a cane to recognizing when her body is telling her no, Lacynda’s story is a powerful reminder to be kind to yourself, accept the new normal when it comes, and keep carrying on.

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Living with chronic illness can leave you carrying experiences and emotions that are difficult to explain, even to yourself. In this episode, Marcy is joined by writer and cancer survivor Brad Buchanan to explore how writing can become a powerful tool for processing illness, trauma, and a body that may no longer feel like the one you once knew. Brad shares the simple writing exercise that finally helped him put words to his stem cell transplant experience, why you don't need to consider yourself a writer to benefit from the practice, and how letting go of your inner critic can make it easier to begin. They also discuss the difference between fighting an illness and learning to live alongside a chronic condition, a shift that will feel familiar to many in the mitochondrial disease community.

Brad Buchanan is a retired English professor, poet, writing workshop facilitator, and two-time cancer survivor who developed severe graft-versus-host disease following a stem cell transplant. After years of treatment and lasting changes to his health, Brad began using his background in creative writing to help others process their own experiences with illness through supportive writing workshops. Drawing on both his personal journey and years of teaching, he shares why writing doesn't need to be polished, shared, or even particularly "good" to be meaningful—and how giving yourself permission to put your experience into words can be an important part of learning to live with what your body has been through.

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Living with mitochondrial disease means constantly managing energy, pain, and physical limitations. For teenager Sean Laughlin, it also means competing on American Ninja Warrior. Known as “Mitoman,” Sean joins Marcy with his mom, Christine, to share how he went from struggling with feeding intolerance and low energy to becoming a nationally competitive ninja athlete. They talk about the backyard ninja course his dad built, the adjustments that allow him to train with Mito, and the unforgettable experience of earning a buzzer on American Ninja Warrior while more than 40 friends and supporters cheered him on from the sidelines.

Sean and Christine also open up about the realities behind those incredible moments. Sean relies on a feeding tube for his nutrition, lives with daily pain and exhaustion, and often needs significant recovery time after training and competitions. But ninja has given him something beyond competition: a community where he can simply be a teenager, friendships built around something other than his disease, and a chance to show other kids facing physical challenges what may still be possible. Now ranked among the top ninja athletes in his age group, Sean has his sights set on returning to American Ninja Warrior and taking his journey even further.

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What happens when the machinery responsible for copying mitochondrial DNA doesn't work the way it should? In this episode, Marcy Young talks with Dr. Bill Copeland, leader of the Mitochondrial DNA Replication Group at the National Institute of Environmental Health Sciences, about the science behind mitochondrial DNA replication and what his decades of research are revealing about mitochondrial disease. Dr. Copeland breaks down complex topics including POLG and Twinkle mutations, heteroplasmy, mitochondrial DNA deletions, and the technique his team developed to detect deletions that conventional methods can miss. He also explains how this work is improving our understanding of disease and helping researchers identify new paths toward diagnosis and treatment.

Dr. Copeland also shares what gives him hope about where mitochondrial disease research is headed. From new discoveries about the structure and function of proteins involved in mitochondrial DNA replication to promising small-molecule approaches being investigated by researchers around the world, the field has changed considerably in recent years. Just as importantly, Dr. Copeland discusses why training the next generation of mitochondrial researchers and connecting directly with patients and families are essential to moving the science forward.

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Exercise can feel intimidating when you live with mitochondrial disease, especially if you're worried about pain, fatigue, or overdoing it. In this episode, Dr. Mark returns to the podcast to explain why movement remains one of the most powerful tools we have for improving mitochondrial health and quality of life. He breaks down the difference between endurance and resistance training, how to start safely at your own level, why recovery is just as important as exercise itself, and how even small improvements in fitness can make everyday activities feel easier. Whether you're new to exercise or trying to regain confidence after setbacks, this conversation offers practical, evidence-based guidance to help you move forward.

Dr. Mark Tarnopolsky is a neurologist, neuromuscular specialist, researcher, and internationally recognized expert in mitochondrial disease, exercise physiology, and nutrition. Drawing on decades of clinical experience and research, he shares why exercise should never be an all-or-nothing proposition, how patients can avoid common mistakes, and why personalized, sustainable movement remains one of the most effective interventions available for improving both healthspan and mitochondrial function.

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Nutrition is one of the most talked-about—and most misunderstood—topics in the mitochondrial disease community. In this episode, Marcy sits down with internationally recognized mitochondrial expert Dr. Mark Tarnopolsky for a practical, evidence-based conversation about what actually matters when it comes to food, supplements, brain fog, and long-term health. From the role of sleep in cognitive function to the science behind creatine, protein intake, processed foods, and popular fad diets, Dr. Mark cuts through the noise and explains what the research really says. Whether you're wondering if the mitochondrial cocktail is worth taking, trying to improve your energy levels, or looking for realistic ways to support your health through nutrition, this episode is packed with actionable insights.

Dr. Mark Tarnopolsky is a Professor of Pediatrics and Head of the Division of Neuromuscular and Neurometabolic Disorders at McMaster University and McMaster Children’s Hospital. A globally respected researcher and clinician, he has spent decades studying mitochondrial disease, muscle disorders, nutrition, exercise, and metabolic health. His work has helped shape how clinicians think about supplements, creatine, and lifestyle interventions for people living with mitochondrial disease, making him one of the leading voices in the field today.

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Whether you're newly diagnosed or have been living with an FAOD for years, finding trustworthy information and connecting with others who truly understand your journey can make all the difference. In this episode, Marcy is joined by MitoAction’s Stephanie Harry to preview MitoAction’s upcoming virtual FAOD Conference and explain why it has become such a valuable resource for patients and families. They discuss how the conference is shaped by the community itself, what attendees can expect this year, and why topics ranging from gene therapy and emerging research to mental health, pregnancy, school, adulthood, and peer connection make this year's program one of the most comprehensive yet.

Stephanie Harry is MitoAction’s FAOD Program Manager and the parent of a son with a fatty acid oxidation disorder. Drawing on both lived experience and years of advocacy, she has helped grow the annual FAOD Conference into a collaborative event that brings together patients, caregivers, researchers, and clinicians from around the world. Whether you're looking to learn, ask questions, or simply connect with others who understand life with an FAOD, this episode offers a helpful introduction to everything the conference has to offer.

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Matthew Cech returns to Energy in Action for a conversation that sheds light on a part of disability history many people have never heard. Inspired by a college course on the psychosocial impact of disability and illness, Matthew shares the stories, advocacy efforts, and pivotal moments that helped shape the rights and accommodations people with disabilities rely on today. From the groundbreaking Camp Jened community to the protests that led to the Americans with Disabilities Act, this episode explores how ordinary people created extraordinary change—and why understanding that history still matters.

Listeners may remember Matthew from a previous episode where he shared his own mitochondrial disease journey. Now a 21-year-old college student pursuing a degree in allied health, he brings both personal experience and academic insight to a discussion about disability rights, accessibility, accommodations, and the ongoing work of creating a more inclusive world. Thoughtful, hopeful, and deeply informative, this conversation is a reminder that many of the opportunities available today were earned through decades of advocacy, courage, and persistence.

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