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
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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:
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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 of her condition — from food restrictions to fatigue — with remarkable self-awareness and strength. Angie shares how the family developed “Rory Friendly” meals to make food inclusive, the importance of open communication, and how school support systems and friendships have helped Rory thrive.

The conversation also explores Rory’s deep love of cheerleading, how she's learned to self-advocate, and what it’s been like facing new complications like prolonged QT syndrome. Angie opens up about the complexities of managing care between specialties and the need for better hospital coordination. They also reflect on their experience attending the MitoAction Conference for the first time, the power of peer support, and the role of storytelling in building community. Together, they model the strength, advocacy, and connection that helps families facing rare disease feel less alone.

Resources and Ways to Connect

Learn More About MitoAction
Visit MitoAction’s Website – https://www.mitoaction.org
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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 matter even years after testing, and how evolving science can change what your results mean. She explains reanalysis, mosaicism, and why new symptoms or improved technology can justify another look.

They also dig into life without a confirmed variant: how to advocate for broader testing, realistic paths to specialty care, the pros/cons of clinical trial eligibility, and why belonging to the mito community can still be validating and useful while you search for answers. Devin shares practical tips for accessing genetic counseling beyond major centers (including telehealth), navigating insurance, and timing reanalysis so it’s most likely to help.

What you’ll hear:

Genetic counselors 101: scope, training, and how they complement your care team

Why post-result follow-ups matter: updates, trials, family planning, and changing guidance

Reanalysis timing, tech improvements, and edge cases like low-level mosaicism

Strategies when testing is “negative” or inconclusive—without losing support or momentum

Access options outside big clinics, including virtual care and multi-disciplinary programs

Visit MitoAction’s Website – https://www.mitoaction.org

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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 concerns, and how the pandemic’s masking made communication harder when lip-reading was no longer possible. He walks through their decision to pursue cochlear implants—the screening, surgery, the “switch-on,” and the hard work of relearning sound—and why that main symptom, while jarring to treat, has been life-changing. Matt also explains how his mom’s cochlear-implant work-up at the University of Pennsylvania unexpectedly led to genetic answers for the whole family, while highlighting the access and cost barriers that keep many patients from timely diagnosis.

Beyond his family’s story, Matt talks about the research it inspired: studying mitochondrial biology alongside health policy to understand how hearing loss affects education and employment. He shares why he’s aiming for an MD/PhD to improve care for people like his mom and aunts, and reflects on living with uncertainty as a twin whose generation may or may not develop symptoms. This conversation is candid, thoughtful, and ultimately hopeful—proof that personal experience can fuel better science and kinder systems.

Resources and Ways to Connect

Learn More About MitoAction:
Visit MitoAction’s Website – https://www.mitoaction.org
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Emergency medicine leader Dr. Lance Becker, Chair at Northwell Health, joins host Marcy Young to unpack a bold new frontier: mitochondrial transplantation. Tracing his path from decades of cardiac arrest research to the cell’s “oxygen emergency center,” Dr. Becker explains how mounting evidence—especially Mother Nature’s own habit of sharing mitochondria between cells—has pushed scientists to ask a once-unthinkable question: instead of tweaking pathways, what if we could replace or augment damaged mitochondria themselves?

In this primer, Dr. Becker outlines what mitochondrial transplantation could look like (from tiny organ-targeted injections to circulating infusions), why approaches will differ by condition, and what very early human experiences—like pediatric heart cases at Boston Children’s—suggest about the potential. He’s candid about where the field truly is (nascent, promising, underfunded) and how patients, families, scientists, funders, and policymakers can accelerate progress together. If you’re looking for grounded optimism—and concrete ways to help move the science faster—this conversation delivers.

Learn More About MitoAction:

Visit MitoAction’s Website – https://www.mitoaction.org

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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 search for a calm, trainable dog; the difference between service dogs (task-trained for one handler) and therapy dogs (owner-trained to comfort others); and how she bonded with Hugo, trained through a formal 12-week class, and earned certification to visit libraries, youth programs, and in-home respite and hospice settings. Karen also explains how she sets boundaries (like masking during COVID surges) and tailors visits around Hugo’s sound sensitivity—opting for quiet spaces, small groups, and kid-led “read to the dog” or scavenger-hunt activities.

At home, Hugo senses Karen’s hard days—sometimes lying gently across her to calm pain and fatigue—and out in the community he “bridges the space” between disability and possibility, giving Karen a way to volunteer sustainably. She recounts a moving hospice visit where Hugo carefully climbed onto a patient’s lap—and later curled beside him in bed—offering simple, unforgettable comfort. If you’ve wondered whether therapy-dog work could fit life with mito, Karen’s story shows how a well-matched dog, thoughtful training, and clear boundaries can create meaningful connection for others while supporting your own well-being.

Learn More About MitoAction

Visit MitoAction’s Website – https://www.mitoaction.org

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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 over years of marriage, moves, careers, and raising kids. Leo reflects on learning about Rachel’s diagnosis early in their dating and the patience and experimentation that followed; Ira describes walking alongside Marcy through testing and a winding path to answers.

Together they open up about the daily realities—planning around seating and standing, pacing weekends, dividing household and parenting tasks, navigating city vs. suburban life, and making space for rest without guilt. They talk about talking (or not) with friends and family, how kids naturally lean on each parent in different ways, the background hum of uncertainty about the future, and why community support matters. It’s an honest, empathetic look at partnership, caregiving, and choosing gratitude amid a life that isn’t always simple.

Learn More About MitoAction

Visit MitoAction’s Website – https://www.mitoaction.org

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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 five children, three of whom passed away from Hunter syndrome, and explains how that experience (plus her own battle with breast cancer) inspired her to create RareGivers, a global platform devoted to the emotional well‑being of patients and caregivers. She walks us through the six‑stage RareGivers Emotional Journey Map, why “sight, sound, taste, touch, and smell” matter for daily self‑care, and how partnerships with Microsoft and other tech leaders are translating the program into hundreds of languages. Marcy and Cristol also tackle social‑media burnout, caregiver guilt, and the power of faith, before Cristol reveals the “Hollywood ending” of her parents’ remarriage—60 years after their first wedding. Whether you’re a mitopatient, a busy parent‑caregiver, or a friend who wants to help but isn’t sure how, this episode is packed with practical tools, hard‑won wisdom, and a reminder that tending to your own heart is the first step in showing up for the people you love.Resources & Ways to Connect

Explore RareGivers

Visit the website – https://raregivers.global

Download the Emotional Journey Map & Guidebook – https://raregivers.global/resources

Watch Cristol’s TEDx Talk – https://www.youtube.com/watch?v=fJNLIlkrwTw&t=11s

Follow Raregivers on:
 • Facebook – https://www.facebook.com/raregivers.global
 • X (Twitter) – https://twitter.com/Raregivers
 • Instagram – https://www.instagram.com/raregivers.global
 • LinkedIn – https://www.linkedin.com/company/raregivers
 • YouTube – https://www.youtube.com/@RareGivers

Learn More About MitoAction

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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 snowballed into years of misdirection—optometrists, ophthalmologists, a false alarm for myasthenia gravis—before a neurologist labeled her condition but offered no guidance. Together, Marcy and Talia unpack why securing genetic testing, specialty care, and even a simple referral can feel like trench warfare when you have a rare mitochondrial disease.

The conversation ranges from parenting with unpredictable energy, “hundred-thousand-dollar mouths” (severe dental problems common in mito), and ADHD-like brain fog to the science linking chronic stress and adverse childhood experiences (ACEs) with health outcomes—spotlighting Gabor Maté’s When the Body Says No. Committing to radical transparency, Talia vows to chronicle each step of her quest for a mito specialist and a full genetic work-up in future episodes, offering listeners a real-time roadmap for self-advocacy and resilience.

Resources & Links

MitoAction – education, support groups and weekly “CPEO Corner” calls

https://www.mitoaction.org

https://www.facebook.com/mitoaction

https://twitter.com/mitoaction

https://www.instagram.com/mitoaction

https://www.linkedin.com/company/mitoaction

ACE (Adverse Childhood Experiences) Information & Self-Quiz

https://www.cdc.gov/violenceprevention/aces

Book Mentioned: When the Body Says No by Dr. Gabor Maté

https://gabormate.com/book/when-the-body-says-no