Energy in Action by MitoAction

MitoAction

Energy In Action by MitoAction will consist of conversations with patients, families, researchers and thought leaders in the mitochondrial disease communities. These podcasts will give you a glimpse into the lives of families affected by mitochondrial disease and the latest in clinical trials, diagnosis, research and the advancement of therapies. If you would like to be a guest or suggest a topic, please email us at info@mitoaction.org.

  1. 6d ago

    Exercise Without Fear: How to Build Stronger Mitochondria Safely

    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

  2. Jul 15

    The Nutrition Advice Mito Patients Need

    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

  3. Jul 1

    FAOD Families: Don’t Miss This Free Virtual Conference

    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

  4. Jun 16

    The Fight That Changed Disability Rights Forever

    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/

  5. Jun 3

    How One FDA Meeting Gave the MELAS Community a Voice

    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

  6. May 20

    Why Sleep Matters More Than You Think with Mitochondrial Disease

    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

  7. May 6

    Free Housing for Hospital Visits? The Resource Every Family Should Know

    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

  8. Apr 15

    Honoring Katie: The Rare Disease Friendships That Change Everything

    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

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Energy In Action by MitoAction will consist of conversations with patients, families, researchers and thought leaders in the mitochondrial disease communities. These podcasts will give you a glimpse into the lives of families affected by mitochondrial disease and the latest in clinical trials, diagnosis, research and the advancement of therapies. If you would like to be a guest or suggest a topic, please email us at info@mitoaction.org.

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