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. FEB 18

    Fighting for Approval and Winning

    Walker, Madison, and Jordan are three relentless advocates whose determination helped push a life-changing therapy for Barth syndrome across the finish line. In this episode of Energy in Action, host Marcy Young sits down with them to unpack the deeply personal journeys that led each of them into advocacy—from living decades with debilitating symptoms, to fighting for newborn sons in heart failure, to honoring loved ones lost too soon. They share how grassroots organizing, congressional outreach, social media campaigns, and powerful patient testimony helped turn a devastating FDA denial into an eventual approval for elamipretide. Along the way, they reveal what it felt like to count remaining medication vials, stand outside the White House with photos of their children, and finally hear the words they had fought so hard for. Their stories are raw, hopeful, and fiercely determined—and they show exactly what can happen when rare disease families refuse to give up, not just for themselves, but for everyone still waiting for a chance. 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

    1h 2m

  2. FEB 4

    Hope for FAOD Patients Through Research

    Dr. Melanie Gillingham is a professor of molecular and medical genetics at Oregon Health & Science University and one of the leading researchers in fatty acid oxidation disorders (FAODs). In this episode of Energy in Action, host Marcy Young speaks with Dr. Gillingham about the journey that led her from clinical dietetics into FAOD research, the impact of meeting one young patient with LCHAD early in her training, and the deeply personal connection she maintains with families affected by these rare diseases. They discuss the results of a five-year natural history study on LCHAD retinopathy, why puberty may be a turning point in vision decline, and how new preclinical models—from iPSC-derived retinal cells to animal studies—are driving progress toward future treatments. Dr. Gillingham also explains why nutrition research is still so limited in mitochondrial disease, how new advances in precision nutrition might change that, and what’s next in her ambitious plan to launch a national FAOD Consortium. From patient-inspired breakthroughs to surprise stories of regained mobility, this episode is a powerful reminder that real hope is rooted in rigorous science—and in the people who never stop asking what’s possible. 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

    30 min

  3. JAN 21

    What PFDD Meetings Mean for the Mito Community

    Patient-Focused Drug Development (PFDD) meetings are one of the most powerful advocacy tools available to rare disease communities—but most patients have never heard of them. In this episode of Energy in Action, host Marcy Young sits down with industry expert Marina Kolocha to unpack what PFDD meetings are, why they matter, and how they can help drive real progress in mitochondrial disease research and treatment. Marina shares insights from her experience moderating over 40 PFDD meetings and breaks down the goals, structure, and long-term impact of these events. Together, they discuss the first-ever PFDD meeting focused on MILAS, scheduled for February 10, 2026, and how patients and caregivers can participate. From voicing daily challenges to shaping future drug development, this conversation offers a rare behind-the-scenes look at a process designed to amplify patient stories at the highest level. Resources and Ways to Connect 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

    30 min

  4. JAN 7

    Creativity and Community: MitoArtisans in Action

    Stephanie Harry and Christine Knox are two powerhouse voices in the mitochondrial disease community, using art as a tool for healing, connection, and empowerment. In this episode of Energy in Action, host Marcy Young sits down with Stephanie and Christine to explore how creative expression can support mental health, build confidence, and foster resilience through all stages of the mito journey. Whether it’s pencil drawings, music, poetry, or pottery, both women emphasize the importance of play, experimentation, and community in living fully with mito. Stephanie, MitoAction’s Patient Support Coordinator, and Christine, an artist and long-time community leader, share how their own experiences with mitochondrial disease and caregiving shaped their passion for art—and how that passion sparked two of MitoAction’s most beloved creative programs: MitoArtisans Playtime and the annual MitoArt Show. They discuss what these spaces offer for patients of all ages and abilities, why creativity belongs in everyone’s toolbox, and how you can get involved—whether as an artist, observer, or simply someone looking to reconnect with themselves. 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

    41 min

  5. 2025-12-17

    Inside MitoAction: Support, Advocacy, and a Community That Cares

    As we kick off a new year, Marcy sits down with Kira Mann and Stephanie Harry to explore the many ways MitoAction supports the mitochondrial disease community. From programs that provide diagnostic guidance and one-on-one support, to creative outlets like art shows and local walks, Kira and Stephanie break down everything MitoAction has to offer — and how you can get involved. Their passion, warmth, and deep knowledge of the challenges patients face shine through in this informative and inspiring conversation. Kira, MitoAction’s CEO, and Stephanie, a longtime patient advocate and Mito411 coordinator, share updates on new therapies, how MitoAction collaborates with pharmaceutical companies and clinicians, and why patient voices are vital to progress. They also highlight key programs like Wondering Wednesdays with genetic counselor Devin Shuman, monthly support groups, and the growing network of Mito Champions. Whether you’re newly diagnosed, a seasoned patient, a caregiver, or a clinician looking to support your patients more meaningfully, this episode is a roadmap to connection, empowerment, and hope. 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

    49 min

  6. 2025-12-03

    Mindset, Mito, and the Power of Positivity

    Greg Conway was diagnosed with CPEO-plus more than 20 years ago, but his outlook on life—and on mitochondrial disease—is anything but typical. In this uplifting episode of Energy in Action, host Marcy Young speaks with Greg about how mito has impacted his vision, how it shaped his diagnostic journey, and how he stays mentally and physically strong through mindset shifts, daily exercise, and community connection. Greg reflects on what it was like getting diagnosed in his 30s, the fear and uncertainty that followed, and the slow process of learning how to live with the disease. He shares the mental health tools that keep him going, why he never gave up biking to work, and how MitoAction support groups have helped him find kinship with others on a similar path. Along the way, Greg opens up about the emotional weight of parenting, the invisible challenges of eye-related symptoms, and what he's learned about resilience—from himself and others. Resources and Ways to Connect 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

    46 min

  7. 2025-11-19

    Making Nutrition Work for You: Planning Meals with Mito in Mind

    Donna DiVito is a registered dietitian at the Children's Hospital of Philadelphia and a returning guest on Energy in Action. In this episode, host Marcy Young welcomes Donna back to answer one of the most common—and exhausting—questions facing people with mitochondrial disease: What’s actually worth the effort when it comes to food? From grocery shopping and meal prep to what to eat when you have no energy at all, this episode is full of practical, mito-specific nutrition advice. Donna explains how to approach meal planning based on your personal budget, energy levels, and dietary needs, and she shares what to look for in protein bars, the truth about yogurt, and how to make the most of frozen foods. She offers smart swaps, time-saving tips, and thoughtful encouragement to help you feel your best without adding stress. 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

    57 min

  8. 2025-11-05

    Parenting with Mito: Talking About the Tough Stuff

    For parents living with mitochondrial disease, one of the hardest conversations to navigate is how—and when—to talk to your kids about your diagnosis. In this deeply honest episode of Energy in Action, host Marcy Young speaks with genetic counselor and mito patient Devin Shuman and mito mom and nurse Sam about the emotional complexities, misconceptions, and practical realities of parenting with a rare condition. Together, they explore the judgment many parents face about their family-building decisions, the evolving medical understanding of inherited disease, and the emotional toll of trying to protect your children while also being truthful. Sam shares her journey parenting five children—four of whom show signs of mitochondrial involvement—and how her oldest daughter’s death and her other daughters’ diagnoses with spinal muscular atrophy have shaped the way her family communicates. Devin brings her dual lens as a patient and professional, reflecting on the ethics of genetic testing, the limits of certainty, and the power of age-appropriate honesty. Whether you’re a parent wondering when to open up, a caregiver navigating grief and resilience, or someone wrestling with generational fears about genetic disease, this conversation offers insight, solidarity, and space to feel your feelings without shame. 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

    48 min
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Trailer

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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