Energy in Action by MitoAction

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

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

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  

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 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  

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 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

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.orgFollow on Facebook – https://www.facebook.com/mitoactionFollow on X (Twitter) – https://twitter.com/mitoactionFollow on Instagram – https://www.instagram.com/mitoactionConnect on LinkedIn – https://www.linkedin.com/company/mitoaction

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 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

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 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  

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 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

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

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 symptoms like muscle weakness, fatigue, and difficulty swallowing. They discuss the importance of meeting basic caloric needs, how antioxidants play a crucial role in mitochondrial health, and why adding simple foods like berries and nut butters can make a big difference. Donna explains how nutrition intersects with muscle strength and swallowing issues, how to work with physical and speech therapists, and what to eat during a crash. Whether you’re struggling to get enough protein, manage energy dips, or simply need smarter meal strategies, this conversation offers empowering, practical guidance for daily life with mito. Resources and Ways to Connect  Visit MitoAction’s Website Follow on Facebook Follow on Twitter Follow on Instagram Connect on LinkedIn  

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 compound Zagociguat, and why the company’s name—meaning “I hear you” in Italian—reflects their commitment to listening to patients. They dive into the current PRIZM clinical trial for individuals with MELAS syndrome, including what makes this study unique: home visits, oral medication, and a crossover design that ensures all participants receive the active drug. Chad explains how the team shaped the trial based on patient interviews, and what’s next for the drug development process. For anyone living with mitochondrial disease—or considering participation in clinical research—this conversation offers clarity, hope, and a glimpse into the future of rare disease treatment. Resources and Ways to Connect Learn more about the PRIZM Trial: Visit TisentoTX.com Search for the PRIZM study on ClinicalTrials.gov Stay Connected with MitoAction: Visit MitoAction’s Website Follow on Facebook Follow on Twitter Follow on Instagram Connect on LinkedIn

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 Council for Exceptional Children, to break down what’s actually happening at the U.S. Department of Education—and what’s not. Kuna explains what the Department of Education is responsible for, what it doesn’t control, and why recent executive orders have sparked panic across the disability community. She offers clear guidance for families navigating IEPs and 504 plans, demystifies enforcement and funding structures, and shares practical ways to advocate for your child right now. With warmth, honesty, and deep policy knowledge, Kuna brings clarity to a complex moment—and reminds us that informed advocacy starts with understanding your rights. Resources and Ways to Connect Learn more from the Council for Exceptional Children: Council for Exceptional Children Website Learn more about MitoAction: Visit MitoAction’s Website Follow MitoAction on Facebook Follow MitoAction on Twitter Follow MitoAction on Instagram Connect with MitoAction on LinkedIn

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 client with their ideal “make and model” — a dog trained not just to assist, but to connect. In this episode of Energy in Action, Rachel joins Marcy Young to walk through her process, philosophy, and deep personal connection to her work. She shares what makes a dog suitable for service, how training evolves over time, and why a strong bond is the foundation of every successful placement. Rachel also opens up about her own unexpected health scare, and how her service dog helped her regain independence after a stroke. Whether you’ve been curious about service dogs or are considering one for yourself or a loved one, this episode is full of thoughtful insight, hard-earned wisdom, and heart. Resources and Ways to Connect Visit A Better Pet’s Website Learn more about MitoAction: Website Facebook Instagram LinkedIn

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 resilience. In this episode of Energy in Action, Jonathan shares how Derby Day began as a backyard tradition and grew into a high-energy Boston fundraiser drawing hundreds of guests. He walks us through the planning process, the meaningful impact of the event, and the incredible role it plays in supporting families affected by mito. Listeners will learn how the event supports MitoAction’s work year-round and how a portion of proceeds fund the Matthew Hardy Camper Fund—giving kids with mitochondrial disease a chance to experience the magic of summer camp. Whether you’ve attended Derby Day or are hearing about it for the first time, this episode highlights why it’s so much more than just a party—it’s a powerful tribute, a fundraising lifeline, and a joyful reminder of what we can accomplish when we come together. Learn More About Derby Day and MitoAction: Visit MitoAction’s Website Learn more about Derby Day Follow MitoAction on Facebook Follow MitoAction on Twitter Follow MitoAction on Instagram Connect with MitoAction on LinkedIn  

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, but survival. In this episode of Energy in Action, April and Jen share their powerful experiences with their service dogs, Bailey and Lexi. From the moment of choosing the right dog to the challenges and rewards of doing the training themselves, both women reveal how their dogs have become vital members of their medical team. Jen recalls how Lexi detected blood clots and infections before doctors could—ultimately saving her life. April opens up about how Bailey provides walking stability, physical grounding during anxiety attacks, and comfort through complex medical procedures. They also discuss the real-world challenges of having a service dog in public spaces, the emotional depth of the bond they’ve formed, and the critical role these dogs play in managing not just their symptoms, but their dignity and independence. Jen also speaks candidly about the profound grief she and Lexi endured after the tragic loss of her wife—and how they’ve leaned on each other in the months since. Their stories are a powerful reminder of the intelligence, intuition, and love service dogs can bring—and the strength that comes from finding the right partner to walk beside you through illness and beyond. Resources and Ways to Connect Learn More About MitoAction: Visit MitoAction’s Website Follow MitoAction on Facebook Follow MitoAction on Twitter Follow MitoAction on Instagram Connect with MitoAction on LinkedIn

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 her condition—leading to a traumatic case of medical kidnapping. In this episode of Energy in Action, Skyler bravely recounts her journey from a childhood filled with chronic illness to the moment she was taken from her family, placed into foster care, and forced to endure psychological manipulation by medical professionals who refused to believe her pain was real. She shares the devastating impact of being wrongly accused, the emotional toll on her family, and how she ultimately fought to regain control over her own medical narrative. Skyler’s resilience shines through as she reflects on the lasting trauma of the experience, her ongoing battle with mitochondrial disease, and her determination to move forward. Her story serves as a powerful warning about the dangers of misdiagnosing medical child abuse—and a testament to the importance of patient advocacy, self-trust, and never giving up the fight for proper care. Resources and Ways to Connect Learn More About MitoAction: Visit MitoAction’s Website Follow MitoAction on Facebook Follow MitoAction on Twitter Follow MitoAction on Instagram Connect with MitoAction on LinkedIn

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, the challenge of navigating healthcare systems that have evolved rapidly in the last decade, and how genetic testing has both expanded and restricted access to appropriate care. Together, Marcy and Devin discuss major shifts in how primary and secondary mitochondrial disease are defined, the growing emphasis on genetic confirmation, and the hope that more nuanced research will eventually help those stuck in diagnostic limbo. Devin’s down-to-earth perspective and empathetic approach highlight the importance of open communication between providers and patients. Tune in for a candid look at life with mito, the complexities of genetic testing, and the community resources that keep hope alive. Join Wondering Wednesdays with Devin A monthly, informal webinar where you can ask Devin genetic-related questions in real-time. Wondering Wednesdays – MitoAction Connect with MitoAction Visit MitoAction’s website – https://www.mitoaction.org/ Follow MitoAction on Facebook – MitoAction Facebook Follow MitoAction on Twitter – MitoAction Twitter Follow MitoAction on Instagram – MitoAction Instagram Connect with MitoAction on LinkedIn – MitoAction LinkedIn

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, and Taryn, the creative director, walk listeners through their powerful process: from the initial strengths-based interview with each child to the creation of custom superhero posters designed by volunteer artists worldwide. By focusing on the child’s favorite activities, unique traits, and hopes for positive change, each poster becomes more than just art—it’s a celebration of individuality and resilience, reminding families of the bright, imaginative spirit that endures beyond any medical diagnosis. Tune in to hear heartwarming stories of kids stepping into their heroic alter egos, and learn how your family can be a part of The Superhero Project’s global community of kindness. Resources and Ways to Connect Sign Up Your Child for a Superhero Poster (Free Service): The Superhero Project Connect with MitoAction Visit MitoAction’s website Follow MitoAction on Facebook Follow MitoAction on Twitter Follow MitoAction on Instagram Connect with MitoAction on LinkedIn

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 full-time job in order to coordinate endless medical appointments, navigate complex school accommodations, and manage Olivia’s frequent surgeries and mobility challenges. Angela recounts the family’s transformational experience with Dalias’s Wish, a MitoAction program that grants wish trips to families affected by mito. Traveling to Give Kids the World Village in Orlando proved not only magical for Olivia and her siblings but also a much-needed reminder that joy can still bloom amidst daily health battles. Angela’s unwavering positivity and devotion to her children shine throughout, offering listeners a poignant glimpse into the resilience and hope that fuel families living with mitochondrial disease. Resources and Ways to Connect with MitoAction Learn More About Dalia's Wish Visit MitoAction’s website Follow MitoAction on Facebook Follow MitoAction on Twitter Follow MitoAction on Instagram Connect with MitoAction on LinkedIn