Energy in Action by MitoAction

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...

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 Edu...

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...

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 tradit...

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 wit...

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 ,...

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 ge...

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 str...

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,...

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 pandemic—from midnight feedings and managing strict dietary regimens to balancing the desire for her children’s...

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 advocate and educator within the mitochondrial disease community. Together, they explore Tania’s early sympto...

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, and chronic illness inspired them to create a safe, inclusive platform for connection. Jacqueline o...

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 overcame countless hurdles, including medical gaslighting and systemic misunderstandings. J.B. discusses...

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 three years, despite numerous hospitalizations, and how she continues to fight for the life she wants to l...

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 dehydrogenase (VLCAD) deficiency. At the end of my pregnancy, my doctor noticed a depletion of f...

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 products available to cope with vision loss and impairment and about the support services available throug...

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 children affected by rare disease through the language they speak best— play! She's a knowledgeable pr...

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.    EPISODE HIGHLIGHTS   Can you share about your rare disease journey? I have a connective tissue disorde...

ENERGY IN ACTION - EPISODE 116 Nutritionally Aware- Boosting Energy with the Foods you Eat   Claire Held is a personal nutrition coach and she joins me to talk about healthy eating to create energy and the foods that are helpful for mitochondrial care. If you have low energy, low muscle tone and fatigue, Claire will share resources and advice for how to improve these challenges.   EPISODE HIGHLIGH...

ENERGY IN ACTION - EPISODE 115 Being A Mother and Physician and Struggling with Mito   Rachel balances caring for herself as a mito patient, but also her two children and for the greater community through the work she does.    EPISODE HIGHLIGHTS   What has your diagnostic journey been like? I was born with mito and my symptoms have remained the same, but I wasn't diagnosed until I was 17 years old...

ENERGY IN ACTION - EPISODE 114 The Life and Legacy of Liel   Tamar Fenton joins me to share the story of her daughter, Liel. Mitochondrial disease has ravaged her family and while her story may be tough to hear, it's important because the work Tamar has done since Liel's death is incredible and impactful.    EPISODE HIGHLIGHTS   Who was Liel? Liel's life was short, but she accomplished so much and...

ENERGY IN ACTION - EPISODE 113 Dr. Vockley's Journey in Mitochondrial Disease Care   Dr. Jerry Vockley works everyday in the development and advancement of mitochondrial disease patient care. He is a Cleveland Family Endowed Chair in Pediatric Research, Professor of Pediatrics and Human Genetics, and Director of the Center for Rare Disease Therapy.    EPISODE HIGHLIGHTS   What inspired your career...

ENERGY IN ACTION - EPISODE 112 CeGaT Genetic Opportunities   Eric Miller and Anil Bhardwaj join me from CeGaT, a biotechnology company and world-leader in genetic analyses for a wide range of medical, research and pharmaceutical applications. They offer a lot of resources and ways to improve patient lives in the mito community and they'll highlight those opportunities for us in this episode.   EPI...

ENERGY IN ACTION - EPISODE 111 Chemistry Rx Jonathan Mordis, Houry Lepedjian and Jennifer Lundy join me from Chemistry Rx. As experts in the preparation of customized medications for patients with rare disorders, they have expertise in compounding formulations for Mitochondrial Disease and they join me for a discussion about everything compounding. EPISODE HIGHLIGHTS What is a compounding pharmacy...