Energy in Action by MitoAction

MitoAction
  • 5.0 (7)
  • HEALTH & FITNESS
  • UPDATED SEMIMONTHLY

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. 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

  2. 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

  3. 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

  4. MAR 4

    Supporting Siblings in Rare Disease Families

    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

    35 min

  5. 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

  6. 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

  7. 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

  8. 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
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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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