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. 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

    28 min

  2. 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/

    41 min

  3. 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

    32 min

  4. 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

    38 min

  5. 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

    38 min

  6. 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

    47 min

  7. Apr 1

    Why Mito Care Is Finally Changing

    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

    29 min

  8. Mar 18

    How Mighty Matthew Keeps Moving Forward

    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

    1h 5m
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Ratings & Reviews

5
out of 5
7 Ratings

About

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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