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Energy in Action by MitoAction
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Energy in Action by MitoAction

Author: MitoAction

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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.
153 Episodes
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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
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
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
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
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 ConnectLearn More About MitoActionVisit 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
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 ConnectVisit 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
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 MitoActionVisit 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
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
Married to Mito

Married to Mito

2025-08-0656:30

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
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