Rare-disease stories with grit and tenderness.
Once Upon A Gene follows families living with rare genetic syndromes, disabilities, and chronic illness through frank personal stories and practical conversations. Effie Parks keeps the tone intimate, often moving from caregiver stress to science, advocacy, faith, and community.
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Once Upon A Gene is a rare-disease and caregiving show centered on families whose lives have been reshaped by genetic syndromes, disabilities, and chronic illness. It is personal from the first minute. Effie Parks names isolation directly, then builds each episode around voices that can make that isolation feel less private. The show’s range is wider than a standard patient-story format. One conversation may explore caregiver archetypes and the stress loops that take over when life gets loud. Another may stay with grief, surrender, faith, and raising a son with hereditary spastic paraplegia SPG3A. A different episode turns toward AAC, where QVoice appears as a practical response to communication that has felt clunky, exhausting, and overdue for change. The science episodes are handled with curiosity and plain language. Genetic testing, Start Genetic, organoids, and rare genetic neurodevelopmental disorder research all sit beside family stories, advocacy frustrations, and the need for better pathways forward. The show is especially strong when it admits that caregiving emotions are not always graceful. Stoicism, shame, anger, trauma, and physical stress are treated as real signals, not character flaws. There is softness here. There is also a scrappy edge, especially in stories about refusing dismissive medical encounters and finding another doctor when a family needs more. A Rare Collection episodes broaden the texture with rare-disease storytelling from several named contributors. Across the feed, the common thread is connection: parents, patients, families, clinicians, and rare organizations trying to move from waiting toward action. Once Upon A Gene suits listeners who want hope without denial, science without coldness, and caregiver talk that leaves room for laughter, pain, faith, frustration, and repair.
Made for: This show is for rare-disease families, caregivers, patient advocates, and clinicians who want emotionally honest conversations grounded in lived experience. It also suits listeners interested in genetic testing, AAC, and rare-disease research.
What sets it apart: Once Upon A Gene pairs intimate caregiver storytelling with practical rare-disease advocacy and accessible science. Its strength is the way candor, family friendship, research, and emotional language all share the same room.
As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.
Short reviews from the PlayNext desk, based on the episodes we processed.
Four rare disease stories find strength in shared experience, isolation, and advocacy.
A Rare Collection gathers four voices from the rare disease community around a shared theme: the value of telling true stories to people who understand isolation, uncertainty, hope, and the need to feel less alone.
A candid conversation about how caregiver stress can settle into the body and why emotional expression matters.
Once Upon a Gene looks at rare and chronic illness caregiving through the body, following the way guilt, shame, stoicism, and feelings with nowhere to land can harden into emotional pain, isolation, rage, and physical pain.
A grounded conversation about how small, measurable routines can help restore a caregiver's sense of strength.
Brittany's conversation starts in the strain of caregiving, then finds its way toward surrender through small practices she can return to. The most resonant thread is the contrast between caregiving's relentless, often unseen labor and the concrete progress of exercise.
Careful gastroenterology for real clinical decisions.
Fast verdicts on power, culture, and reputation.
Plain talk for complicated healthcare.
Host Effie Parks interviews her sister Christy Foster, a somatic therapist, about how physical and emotional stress manifests in the bodies of rare disease caregivers.
Host Effie Parks interviews Brittni Lamb about her journey raising a son with SPG3A, a rare genetic disease.
Effie Parks interviews Terry Jo Bichell about COMBINEDBrain's mission to transform research and treatment for rare genetic neurodevelopmental disorders through collaboration and patient advocacy.
Effie Parks interviews Matt Hay, a patient advocate with Neurofibromatosis Type 2, about his journey with the rare genetic condition, love, loss, and the playlist that has accompanied his life.
Effie Parks interviews Mariah Gillaspie about building in-person connections for special needs moms through the Colorado Mama Tribe.
Effie Parks interviews Janie Reade, a mother of a child with SYNGAP1, about how lifting emotional burdens improved her parenting.
An integrative health practitioner and CTNNB1 mom discusses small but impactful changes for caregiver health, focusing on gut health, stress management, and sustainable wellness.
Effie Parks introduces a four-part series on caregiver archetypes with her sister Christy Foster, starting with the Child Archetype and how to soothe your inner child without letting it take over.
On Once Upon A Gene, Effie Parks interviews Brittany Lamb about raising her four-year-old son Jameson, who has the ultra-rare genetic disease SPG3A.
Effie Parks introduces AAC Awareness Month and previews an interview with Lana Marcucio, who created the Q-Voice app to improve AAC for her daughter.
Geraldine Bliss discusses the importance of genetic testing and introduces the Start Genetic movement for families affected by rare diseases.
Effie Parks interviews Maya Gostia, COO and lead scientist at Brainstorm Therapeutics, about growing approximately one-millimeter brain organoids from patient blood or skin cells.
Once Upon A Gene’s “A Rare Collection” episode centers on four people from the rare disease community, each speaking to the theme “Because of You.” Kyle Bryant describes being diagnosed with Friedreich’s Ataxia at 17 in 1998 and pitching a 2,500-mile cross-country bike ride to Memphis with a $30,000 fundraising goal.
Once Upon A Gene host Effie Parks interviews Amber Pierson and Chelsea Kuhn, the Columbus, Ohio creators of Lemon Cake, about finding joy while raising medically complex children.
Effie Parks interviews Jeffrey Allen, whose son Lucas has creatine transporter deficiency, about rare-disease parenting, advocacy, and public storytelling.
Gay Grossman of GeneDx tells host Effie Parks that exome and genome testing reach up to 48% diagnostic yield, compared with 9 to 20 percent for a microarray.
Tim Coleman of Orion Health tells host Effie Parks that parents can draw their children's blood at home with the TAP2 device, a painless capillary draw that takes about 90 seconds.