PODCAST · health
Energy in Action by MitoAction
by 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 [email protected].
Episodes
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Living Fully Despite Mito
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”...
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Writing Your Way Through Chronic Illness
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…
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Mitoman Takes on American Ninja Warrior
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...
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The Research Unlocking Mitochondrial DNA
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…
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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…
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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…
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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...
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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…
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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…
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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...
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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…
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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...
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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…
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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…
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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...
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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...
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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…
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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...
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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...
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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...
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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...
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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...
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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...
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How Rory’s Family Built a Life That Works With LCHAD
In this heartfelt conversation, Marcy sits down with mother-daughter duo Angie and Rory to talk about living with long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency (LCHAD), a rare fatty acid oxidation disorder. Diagnosed through newborn screening, Rory has grown up navigating the challenges…
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After the Diagnosis: Genetic Counseling & the Mito Journey
In this episode, Marcy welcomes returning guest Devin to unpack what happens after the diagnostic odyssey—whether you’ve received a genetic answer or are still in limbo. Devin, a genetic counselor, breaks down what GCs actually do (and how they differ from physicians), why ongoing check-ins…
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Hearing Loss, Family, and Hope: A Student’s View on MIDD
Duke senior Matt joins host Marcy Young to share how maternally inherited diabetes and deafness (MIDD) has shaped his family—and his path in science. Matt describes the different ways MIDD shows up in his mother and two maternal aunts, from progressive hearing loss to diabetes and vision…
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Dogs for Mito Part 3: Life with a Therapy Dog
In this episode of Energy in Action, host Marcy Young talks with mito patient Karen Richtman about the healing power of her therapy dog, Hugo—a gentle, long-legged Labradoodle who became both her companion and her partner in service. Karen shares how living with mitochondrial myopathy shaped her...
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Married to Mito
In this candid conversation, host Marcy Young welcomes two special guests: her husband, Ira Young, and Leo Gertner, husband of active MitoAction community member Rachel P. They share how their relationships began, the moment mito entered the picture, and what “we’re in this together” looks like...
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Raregivers: Turning Caregiver Burnout into Breakthroughs
Host Marcy Young sits down with Cristol Barrett O’Loughlin—founder and CEO of RareGivers—for an honest, uplifting conversation about what it really takes to care for someone who is living with a lifelong, often‑progressive illness. Cristol shares her extraordinary back‑story as the youngest of…
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Navigating CPEO: Talia’s Search for Answers, Care, and Community
Mental-health therapist, mom of two, and newly diagnosed CPEO patient Talia joins host Marcy Young to share the winding, often infuriating path that finally put a name to her drooping eyelids, crushing fatigue, and stubborn back pain. She recounts how a “lazy eye” noted in theater head-shots...
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Nutrition Tips for Weak Muscles and Fatigue
Donna DiVito is a registered dietitian at the Children's Hospital of Philadelphia and one of the few nutrition experts with deep experience in mitochondrial disease. In this episode of Energy in Action, host Marcy Young and Donna explore how diet and meal timing can help patients manage common...
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How Tisento is Advancing Mitochondrial Research
Chad Glasser is the Senior Director of Clinical Research at Tisento Therapeutics, a company focused entirely on developing treatments for mitochondrial disease. In this episode of Energy in Action, Chad speaks with host Marcy Young about the origins of Tisento, the science behind their lead...
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The Fight for Educational Rights: What Mito Families Need to Know
As proposed federal changes stir confusion and anxiety, many parents of children with mitochondrial disease are left wondering what’s next for special education in America. In this urgent and illuminating episode, Marcy Young sits down with Kuna Tavalin, Senior Policy and Advocacy Advisor at the...
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How to Become Paired with A Service Dog with Rachel Friedman
Rachel Friedman has spent over two decades helping people with medical, psychiatric, and mobility challenges build transformative partnerships with service dogs. As the founder of A Better Pet, she combines her background in social work with her unique gift for animal behavior to match each…
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Honoring Sandra Russell Through 15 Years of Derby Day
When Jonathan Russell lost his mother Sandra to mitochondrial disease, he and his family turned grief into action—launching what would become one of MitoAction’s most cherished annual events. Now in its 15th year, the Sandra K Russell Derby Day Benefit is a celebration of community, hope, and...
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The Lifesaving Bonds Between Service Dogs and Their Mito Warriors
Living with mitochondrial disease means navigating a life filled with uncertainty, medical complexity, and physical limitations. For April and Jen, two women in the MitoAction community, the decision to bring a service dog into their lives became a turning point—one that offered not just support,...
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Faced with Medical Kidnapping: Skyler’s Story
At just 13 years old, Skyler’s life took a harrowing turn when she was forcibly separated from her parents and accused of fabricating her illness. Despite years of documented medical history, suspected mitochondrial disease, and a range of debilitating symptoms, doctors and authorities dismissed...
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Mitochondrial Shifts: A Conversation with Genetic Counselor Devin Shuman
In this episode of Energy in Action, host Marcy Young introduces Devin Shuman—a genetic counselor who lives with a rare form of mitochondrial DNA depletion syndrome and brings a unique blend of medical knowledge and personal experience to the mito community. Devin shares her diagnostic odyssey…
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The Superhero Project’s Mission to Empower Kids
In this uplifting episode of Energy in Action, host Marcy Young is joined by Lisa Kollins and Taryn Cozzy of The Superhero Project—a nonprofit that uses art to highlight the strengths and identities of children and teens living with serious illnesses and disabilities. Lisa, the project’s founder,...
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From Diagnosis to Dalia’s Wish: A Loving Family's Journey with Mito
In this moving episode of Energy in Action, host Marcy Young speaks with Angela Schneider, a devoted mother of four, whose daughter Olivia lives with a rare form of mitochondrial disease. Angela shares how Olivia’s diagnosis brought life as they knew it to a halt—leading Angela to leave her...
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Raising Warriors: A Mother’s Journey with VLCAD
In this heartfelt episode of Energy in Action, host Marcy Young chats with Megan Cranshaw, a devoted mother of two young boys who both have VLCAD (Very Long-Chain Acyl-CoA Dehydrogenase Deficiency). Megan shares the unique challenges of navigating rare disease parenting during a global...
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From Nurse to Advocate: Tania’s Mito Experience
In this powerful episode of Energy in Action, host Marcy Young welcomes Tania, a resilient mito patient, as she shares her compelling journey of navigating life with a rare and challenging diagnosis. Tania recounts her transition from a fulfilling career as a pediatric nurse to becoming an…
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Dateability: A Dating App for the Disability and Chronic Illness Community
In this episode of Energy in Action, host Marcy Young sits down with sisters Jacqueline and Alexa Child, co-founders of Dateability, the first dating app designed for people with disabilities and chronic illnesses. Together, they share the story of how personal experiences with rejection, stigma,...
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A Family of Mito Warriors who PUBLISH!
In this episode of Energy in Action, host Marcy Young welcomes J.B. McGee, a mother and advocate whose story sheds light on the complex journey of living with mitochondrial disease. J.B. shares the challenges her family faced in securing diagnoses for her two sons, Noah and Jonah, and how they...
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Our Space: Building Community for Young Adults with Mitochondrial Disease
In this episode of Energy in Action, host Marcy Young sits down with Alex Salser, a passionate advocate and volunteer with MitoAction, to discuss her inspiring journey of overcoming challenges with LCHAD, a mitochondrial disease. Alex shares her recent milestone of graduating college in just…
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Sharickah - Mito Mom Warrior
ENERGY IN ACTION - EPISODE 120 Sharickah - Mito Mom Warrior Sharickah is a mito mom and a fierce fighter and advocate for her son. EPISODE HIGHLIGHTS Can you share with us what your son's diagnosis journey has been like? My 8-year-old son was diagnosed at 6 days old with very long-chain acyl-CoA...
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Daily Living Aids
ENERGY IN ACTION - EPISODE 119 Daily Living Aids Barbara Piascik and Jackie Bumba join us from the Cleveland Sight Center store, which serves those with low and no vision by providing more than 800 innovative daily living products. They're here to answer all of our questions about using the...
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Rare Disease In the Room
ENERGY IN ACTION - EPISODE 118 Rare Disease In the Room There are tough conversations to be had around rare disease, especially when it affects children. Danielle Eaves Hernandez is a certified child life specialist and recreational therapist. She has worked with hundreds of families to support...
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Rare Sisters
ENERGY IN ACTION - EPISODE 117 Rare Sisters My sister-in-law and good friend Erin is a member of the rare disease community. She's joining me to share her story and her rare disease journey. While we have different diagnoses, dealing with an invisible illness is something we both understand....
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ABOUT THIS SHOW
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 [email protected].
HOSTED BY
MitoAction
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Frequently Asked Questions
How many episodes does Energy in Action by MitoAction have?
Energy in Action by MitoAction currently has 166 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is Energy in Action by MitoAction 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,...
How often does Energy in Action by MitoAction release new episodes?
Energy in Action by MitoAction publishes regularly with 166 episodes available. Check the episode list for the typical release schedule.
Where can I listen to Energy in Action by MitoAction?
You can listen to Energy in Action by MitoAction on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts Energy in Action by MitoAction?
Energy in Action by MitoAction is created and hosted by MitoAction.
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