Once Upon A Gene Titelbild

Once Upon A Gene

Once Upon A Gene

Von: Effie Parks
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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.© 2019 - 2022 Effie Parks Beziehungen Elternschaft & Familienleben Sozialwissenschaften
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  • ONCE UPON A GENE – EPISODE 275: How AI is Making Personalized Therapies Faster, Cheaper, and Accessible for the World’s Rarest Diseases with Steven Ringel

    ONCE UPON A GENE – EPISODE 275: How AI is Making Personalized Therapies Faster, Cheaper, and Accessible for the World’s Rarest Diseases with Steven Ringel
    May 28 2026
    Get your free Nome report at www.nome.bio – Families can upload a genetic report and receive a free personalized therapy feasibility report in minutes. In this powerful conversation, Effie Parks sits down with Steven Ringel — patient, sibling of a patient, founder of the Kazuna Foundation, and CEO of Nome to discuss how AI is revolutionizing personalized medicine for the smallest rare disease communities. Diagnosed at 17 with an ultra-rare inherited retinal disease caused by mutations in the KIZ gene (and later learning his younger sister Natalie shares the exact same diagnosis), Steven refused to accept the doctors’ advice to “learn braille and prepare to go blind.” Instead, he built a 501(c)(3) to develop custom gene therapies and then launched Nome, an AI operating system that makes personalized therapies faster, cheaper, and accessible even to the tiniest patient advocacy groups. Since the original recording, Nome has exploded: they closed a $2.7 million seed round and their AI platform is now live at nome.bio Steven shares the deeply human side of rare disease, the operational bottlenecks that hold back small patient-led efforts, and how Nome’s AI acts as the “quarterback” to coordinate experts, manufacturers, and regulators — turning “maybe” into clear, actionable next steps. If you or a loved one has a genetic diagnosis and you’re wondering whether a personalized therapy could be possible, head over to www.nome.bio right now and upload your genetic report. It’s completely free, takes just minutes, and could open doors you didn’t even know existed. Steven and the Nome team built this tool because every patient deserves to know their options — no matter how rare their condition is. Thanks for listening to Once Upon a Gene! If this episode lit a spark, share it with a fellow rare disease family and help us spread the word about Nome. See you in the next episode!
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    45 Min.
  • ONCE UPON A GENE – EPISODE 274: Caregiver Archetypes of Survival (Part 4) | The Victim Archetype: From Cowardly Lion to Roaring Warrior – Reclaiming Your Inner Courage Without Losing Yourself with Christy Foster

    ONCE UPON A GENE – EPISODE 274: Caregiver Archetypes of Survival (Part 4) | The Victim Archetype: From Cowardly Lion to Roaring Warrior – Reclaiming Your Inner Courage Without Losing Yourself with Christy Foster
    May 21 2026
    In the final episode of their four-part archetype series, Effie Parks and archetype expert Christy Foster explore the Victim Archetype—represented by the Cowardly Lion in The Wizard of Oz. They emphasize that archetypes are neutral energies (as taught by Carl Jung and Caroline Myss) that everyone experiences. The conversation is tailored for parents raising children with disabilities, focusing on the real, repeated feelings of powerlessness, fear, and exhaustion—and how to alchemize them by dancing between the Victim and the Warrior. Christy guides listeners through noticing victim language and patterns, invoking the Warrior for sacred action (like holding your child during medical procedures), repairing afterward, asking for/receiving help, reparenting the inner child, and interrupting mental loops. Effie shares personal stories about hot yoga as repair, using cowgirl boots as a power object, and the daily reality of “going ice” (dissociating) vs. staying embodied as the Warrior. The episode is compassionate, practical, and full of simple tools you can put on your fridge or bedside table today. Subscribe to Christy’s podcast: No One is Perfect ⁠Once Upon a Gene Episode 29: Oxygen Masks & Motherhood with Christy Foster⁠ ⁠Once Upon a Gene Episode 239: How Stress Shows Up in the Body as Real Pain with Christy Foster⁠ If this episode touched you, please share it with another rare disease or special needs parent who needs to hear that they’re not alone — and that hope can come back. 💛 Thanks for listening! CONNECT WITH EFFIE PARKS X Instagram Linkedin Leave a Podcast Review
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    1 Std. und 2 Min.
  • ONCE UPON A GENE - EPISODE 273 Caregiver Archetypes of Survival (Part 3) The Saboteur Archetype: Reclaiming Your Inner Authority Without Losing Yourself, w/ Christy Foster

    ONCE UPON A GENE - EPISODE 273 Caregiver Archetypes of Survival (Part 3) The Saboteur Archetype: Reclaiming Your Inner Authority Without Losing Yourself, w/ Christy Foster
    May 14 2026
    In part 3 of our 4-part series on Caregiver Archetypes, my sister and somatic therapist Christy Foster returns to unpack the Saboteur — the clever inner voice that second-guesses you, overthinks everything, and talks you out of what you actually want and need. We explore how this archetype shows up for caregivers (especially around time, perfectionism, trusting your gut when doctors gaslight you, asking for help, and feeling “not enough”). You’ll learn how to spot the Saboteur in real time, separate doubt from data, run tiny experiments to rebuild self-trust, and shift from the Scarecrow (who believes he has no brain) into the Magician — the part of you that creates something out of nothing, including time and sovereignty. This episode is packed with practical language shifts, somatic awareness, and compassionate tools that have literally changed how I show up for myself and Ford.
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    1 Std. und 3 Min.
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