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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. Learn More About MitoAction Website: https://www.mitoaction.org Facebook: https://www.facebook.com/MitoAction Instagram: https://www.instagram.com/mitoaction LinkedIn: https://www.linkedin.com/company/mitoaction X: https://x.com/MitoAction

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. Learn More About MitoAction Website: Homepage - MitoAction Facebook: Mitoaction Instagram: MitoAction (@mitoaction) • Instagram profile LinkedIn: https://www.linkedin.com/company/mitoaction X: MitoAction (@MitoAction) on X

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. Learn More About MitoAction Website: https://www.mitoaction.org Facebook: https://www.facebook.com/MitoAction Instagram: https://www.instagram.com/mitoaction LinkedIn: https://www.linkedin.com/company/mitoaction X: https://x.com/MitoAction

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. Learn More About MitoAction Website: https://www.mitoaction.org Facebook: https://www.facebook.com/MitoAction Instagram: https://www.instagram.com/mitoaction LinkedIn: https://www.linkedin.com/company/mitoaction X: https://x.com/MitoAction

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. Learn More About MitoAction Website: https://www.mitoaction.org Facebook: https://www.facebook.com/MitoAction Instagram: https://www.instagram.com/mitoaction LinkedIn: https://www.linkedin.com/company/mitoaction X: https://x.com/MitoAction

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. Learn More About MitoAction Website: https://www.mitoaction.org Facebook: https://www.facebook.com/MitoAction Instagram: https://www.instagram.com/mitoaction LinkedIn: https://www.linkedin.com/company/mitoaction Twitter/X: https://x.com/MitoAction

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. Register Here: https://events.ringcentral.com/events/2026-international-metabolic-conference/registration Learn More About MitoAction Website: https://www.mitoaction.org Facebook: https://www.facebook.com/MitoAction Instagram: https://www.instagram.com/mitoaction LinkedIn: https://www.linkedin.com/company/mitoaction X: https://x.com/MitoAction

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. Learn More About MitoAction Website: https://www.mitoaction.org Facebook: https://www.facebook.com/mitoaction X (Twitter): https://twitter.com/mitoaction Instagram: https://www.instagram.com/mitoaction LinkedIn: https://www.linkedin.com/company/mitoaction/

For families living with MELAS, the emotional toll of mitochondrial disease extends far beyond the diagnosis itself. In this episode of Energy in Action, Marcy Young is joined by PFDD panel participants Gordon, Jackie, and Cheryl to reflect on their experience speaking directly to the FDA about the realities of living with MELAS. Together, they share deeply personal stories about caregiving, advocacy, grief, progression, and the urgent need for better treatments and support for mitochondrial disease families. The conversation explores what it was like to prepare for such a vulnerable and high-stakes meeting, how the panelists unexpectedly formed lasting bonds through the process, and why sharing the hardest parts of this disease matters. From navigating stroke-like episodes and delayed diagnoses to the emotional impact on siblings and caregivers, this episode offers an honest look at the ripple effects of MELAS — while also highlighting the hope that comes from advocacy, connection, and being heard. In this episode, you’ll hear: What a Patient-Focused Drug Development (PFDD) meeting is and why it matters for rare disease communities Gordon’s story of his late wife’s sudden MELAS diagnosis and how MitoAction became a lifeline for his family Jackie’s perspective as a sibling advocate supporting her brother TJ through disease progression Cheryl’s experience caring for both her husband and son while navigating a devastating diagnosis The emotional preparation involved in speaking directly to the FDA about life with MELAS Why caregivers, siblings, and family members carry their own unique form of grief How advocacy and storytelling can create urgency for treatments, research, and change The lasting impact of connection within the mitochondrial disease community Resources & Ways to Connect Visit MitoAction’s Website: https://www.mitoaction.org Learn More About MitoAction Visit MitoAction’s Website: https://www.mitoaction.org Follow on Facebook: https://www.facebook.com/mitoaction Follow on X (Twitter): https://twitter.com/mitoaction Follow on Instagram: https://www.instagram.com/mitoaction Connect on LinkedIn: https://www.linkedin.com/company/mitoaction

For people living with mitochondrial disease, sleep is not just rest. It is part of how the body restores, rebuilds, and prepares for the next day.  In this episode of Energy in Action, Marcy Young welcomes back Dr. Mark for a practical and deeply informative conversation about sleep, fatigue, and mitochondrial health. Dr. Mark explains why sleep is so important for the body’s repair systems, how circadian rhythm connects to mitochondrial function, and why poor sleep can have such a noticeable impact on energy, pain, focus, and overall well-being. Marcy and Dr. Mark also talk through the everyday factors that can help or hurt sleep, from caffeine, screen time, alcohol, late meals, and exercise timing to pillows, mattresses, light, sound, naps, melatonin, sleep apnea, restless leg syndrome, and sleep tracking devices. For anyone in the mito community who struggles to fall asleep, stay asleep, or wake up feeling rested, this episode offers clear, realistic guidance on what may be worth adjusting and when to seek medical support. Learn More About MitoAction Visit MitoAction’s Website: https://www.mitoaction.org Follow on Facebook: https://www.facebook.com/mitoaction Follow on X (Twitter): https://twitter.com/mitoaction Follow on Instagram: https://www.instagram.com/mitoaction Connect on LinkedIn: https://www.linkedin.com/company/mitoaction

Mike Aichenbaum, founder of Hosts for Hospitals, turned his own battle with leukemia into a mission that has now supported over 4,500 patient families traveling to Philadelphia for care. Joined by one of the organization’s hosts, Rebecca Flanner, this episode highlights a simple but powerful idea: placing families in real homes—not hotels—during some of the most stressful moments of their lives. They share how the organization works, who qualifies, and why something as small as a quiet, welcoming place to stay can completely change a family’s experience during treatment. From emotional patient stories to the logistics of matching hosts with families, this conversation sheds light on a resource that removes both financial strain and emotional isolation. If you or someone you know travels for medical care, this is an episode worth knowing about. Resources & Ways to Connect Hosts for Hospitals Website: Home - Hosts for Hospitals Visit MitoAction’s Website: Homepage - MitoAction Follow on Facebook: Mitoaction Follow on X (Twitter): MitoAction (@MitoAction) on X Follow on Instagram: MitoAction (@mitoaction) • Instagram profile Connect on LinkedIn: https://www.linkedin.com/company/mitoaction

Stephanie and Tasia return to Energy in Action to honor their beloved friend Katie—a fierce advocate, deep thinker, and unforgettable presence in the rare disease community. Though they never met her in person, Katie became a constant in their lives, offering guidance, humor, and an unshakable commitment to helping others navigate the realities of living with a rare metabolic disorder. In this deeply emotional conversation, they reflect on the unique bond formed through rare disease, the complexity of grieving someone you never met face-to-face, and the lasting impact Katie had on their lives. They share stories of her relentless self-advocacy, her generosity in supporting others, and the way she found joy and connection despite serious illness. This episode is a powerful reminder of how meaningful these relationships can be—and why they deserve to be honored. Resources & Ways to Connect Visit MitoAction’s Website: https://www.mitoaction.org Follow on Facebook: https://www.facebook.com/mitoaction Follow on X (Twitter): https://twitter.com/mitoaction Follow on Instagram: https://www.instagram.com/mitoaction Connect on LinkedIn: https://www.linkedin.com/company/mitoaction

Dr. Rosanna Sanchez Russo is a biochemical geneticist at Emory University who has dedicated her career to caring for patients with mitochondrial and other rare diseases. In this episode of Energy in Action, she shares the path that led her from growing up in Colombia—where she was first exposed to children with complex medical conditions—to becoming a physician deeply committed to advancing care for some of the most challenging disorders in medicine. She also explains what drew her specifically to mitochondrial disease and why these conditions continue to push both science and clinical care to their limits. Dr. Sanchez Russo offers a clear look at how mitochondrial care is evolving today, from earlier and more accurate diagnoses to the growing importance of multidisciplinary teams and personalized approaches to treatment. She walks through what families can expect when meeting with a geneticist, how care plans are built, and why nutrition, supplements, and emerging therapies remain areas of both promise and uncertainty. With new clinics, collaborations, and research efforts taking shape, this conversation provides an honest and hopeful perspective on where mitochondrial disease care stands today—and where it may be headed next. Resources & Ways to Connect Visit MitoAction’s Website: https://www.mitoaction.org Follow on Facebook: https://www.facebook.com/mitoaction Follow on X (Twitter): https://twitter.com/mitoaction Follow on Instagram: https://www.instagram.com/mitoaction Connect on LinkedIn: https://www.linkedin.com/company/mitoaction

Matthew Cech has spent his entire life adapting to mitochondrial disease, but his story is about far more than the medical challenges he has faced. In this episode of Energy in Action, he shares his long diagnostic journey, from missed milestones and years of invasive testing to finally receiving a diagnosis of Complex I and III mitochondrial disease. He also opens up about one of the most harrowing chapters of his childhood, when a routine motility study led to sepsis, emergency surgery, a medically induced coma, and a month-long hospital stay that changed everything. Matthew also talks about living with a G-tube, J-tube, and ileostomy, the emotional reality of growing up unable to eat normally, and how much it meant to be supported by his family, school, medical team, and wider community. He reflects on the accommodations that helped him build a full life, the organizations that gave him extraordinary experiences, and the superhero identity he created for himself as “Mighty Matthew.” This is a powerful conversation about survival, perspective, and what it means to keep finding joy and purpose in a life that has asked so much. Resources & Ways to Connect Visit MitoAction’s Website: https://www.mitoaction.org Follow on Facebook: https://www.facebook.com/mitoaction Follow on X (Twitter): https://twitter.com/mitoaction Follow on Instagram: https://www.instagram.com/mitoaction Connect on LinkedIn: https://www.linkedin.com/company/mitoaction

Ryan Mendel is a graduate student in genetic counseling who has already immersed herself in mitochondrial research, clinical care, and rare disease advocacy. In this episode of Energy in Action, host Marcy Young speaks with Ryan about her path from a high school genetics class to working in the Mitochondrial Medicine Frontier Program at Children’s Hospital of Philadelphia, where she conducted large-scale drug screening research and presented findings at national conferences. Ryan shares what it was like to witness both the lab side and the clinic side of mitochondrial disease—and how that dual perspective shaped her commitment to patient-centered care. Now completing her master’s degree in genetic counseling, Ryan is focusing her thesis on an often-overlooked group in rare disease families: unaffected siblings. She discusses how pediatric genetic diagnoses impact siblings emotionally, socially, and long-term—from feeling pressure to overachieve, to becoming young caregivers, to quietly carrying fear and uncertainty. Ryan explains her goal of creating practical, family-centered resources that genetic counselors can use to better support siblings from the very beginning. This conversation offers hope for the future of rare disease care and highlights the importance of treating the whole family—not just the diagnosis. Resources and Ways to Connect  Visit MitoAction’s Website – https://www.mitoaction.org  Follow on Facebook – https://www.facebook.com/mitoaction  Follow on X (Twitter) – https://twitter.com/mitoaction  Follow on Instagram – https://www.instagram.com/mitoaction  Connect on LinkedIn – https://www.linkedin.com/company/mitoaction