Once Upon A Gene

Effie Parks
  • 5.0 (279)
  • Personal Journals
  • Updated Weekly

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.

  1. 2h ago

    ONCE UPON A GENE – EPISODE 276: His Two Sons Were Diagnosed with Coats Plus Syndrome — One Father’s Story of Rare Disease Advocacy and Brotherhood with Bryan Docobo

    Bryan Docobo — attorney, father, rare disease advocate, and founder of the Coats Plus Foundation. Bryan opens up about the devastating journey of losing his four-year-old son Ethan to Coats Plus Syndrome (a rare telomere disorder caused by a CTC1 gene mutation) in June 2024, while fiercely fighting for his older son Liam, who is also battling the same condition. Bryan shares the pre-diagnosis struggles, the shocking moment of Liam’s grand mal seizure that led to the diagnosis, the science behind the disease (telomere dysfunction affecting blood vessels, brain, eyes, and GI tract), and the proactive steps his family has taken. These include pushing for Avastin (anti-VEGF) treatment that has stopped brain calcifications and leukodystrophy progression in Liam, stem cell infusions showing clinical improvements, and an ambitious push for personalized gene therapy (requiring $3–5 million in funding).He also discusses the profound grief that transformed into purpose, including losing 80 pounds, deepening his spirituality, and founding the Luminary Tribe — a growing men’s support community in South Florida (with plans to expand) focused on vulnerability, connection, and helping high-achieving men show up stronger for their families. This episode is a masterclass in resilience, advocacy, fatherhood, and turning unimaginable pain into meaningful action that could help not just Coats Plus families but the broader rare disease and longevity communities. Links: Coats Foundation LUMENARY Instagram Bryan's Instagram

    41 min

  2. May 28

    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

    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 Kizuna 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!

    45 min

  3. May 21

    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

    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

    1h 2m

  4. May 14

    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

    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.

    1h 3m

  5. Apr 23

    ONCE UPON A GENE - EPISODE 272 Caregiver Archetypes of Survival (Part 2) The Prostitute Archetype: Reclaiming Your Worth Without Losing Yourself, w/ Christy Foster

    Welcome to Part 2 of our 4-part Caregiver Archetype series. In this episode, Effie is joined by somatic therapist Christy Foster to explore the Prostitute Archetype—also known as the Worth/Value archetype. This pattern asks:What part of myself am I trading for approval, peace, love, or survival? For caregivers, this can show up as sacrificing your time, identity, health, and needs just to keep everything going. While it often comes from love, the cost can quietly become too high. In this conversation, you’ll learn: How this archetype shows up in caregiving The difference between self-sacrifice and self-abandonment Why your needs still matter Simple ways to reconnect with yourself—even in the chaos This episode is your reminder:You can care for your child without losing yourself in the process. Series Note: This is Episode 2 of 4. Next up: The Saboteur Archetype.

    45 min

  6. Apr 16

    Caregiver Archetypes for Survival (Part 1) The Child Archetype : Soothe Your Inner Child Without Letting It Drive the Bus, w/ Christy Foster

    In this opening episode of our special 4-part series on Caregiver Archetypes, host Effie Parks welcomes back her sister, Christy Foster, for a heartfelt and refreshingly different conversation. Christy will introduce the Child Archetype—the part of us that longs to belong, dream big, and feel safe… but can also slam the door shut, shout “It’s not fair!”, and feel completely powerless when life gets loud. It’s a simple, practical language to help caregivers notice their stress patterns in real time and choose kinder next steps. Christy guides listeners through how to spot when your inner Child is activated, how to soothe that part of yourself with compassion, and, most importantly, how to keep it from taking the wheel. You’ll walk away with: A clear understanding of the Child Archetype and why it shows up so strongly for parents and caregivers Tools to recognize your own “I have no choice” stress loops Small, doable resourcing choices you can make today instead of spiraling Permission to get curious, drop perfection, and treat yourself with the same gentleness you offer your loved ones Whether you’re in the thick of caregiving, navigating big emotions, or simply craving more self-awareness, this episode gives you a compassionate new way to understand yourself when stress hits. Mentioned in this episode: 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 This is the first of four episodes exploring different caregiver archetypes. Stay tuned for Parts 2–4

    55 min

  7. Apr 2

    From Hopeless Grief to Heavenly Hope: Brittni Lamb on Surrender, Faith, and Raising a Son with Hereditary Spastic Paraplegia SPG3A

    Episode Description: In this warm and deeply honest conversation, I sit down with my sweet friend Brittni Lamb — a sunshine-loving mama in Arizona raising two daughters and her adorable son Jameson, who has the ultra-rare Hereditary Spastic Paraplegia SPG3A. Brittni shares the raw season after Jameson’s diagnosis when grief, loneliness, and hopelessness felt all-consuming. She talks about crying herself to sleep, walking through the days in a fog, and the heavy mom guilt she carried. Then she opens up about the slow, beautiful healing that came through daily surrender, faith, weight training, community with other special needs moms, and choosing to notice the “glimmers” of joy with her family. We talk about what surrender really looked like in her body and her home, how she’s learning to care for herself so she can show up for her kids, the unique bond she shares with Jameson, and why her hope is now anchored in heaven — where she dreams of one day seeing Jameson walking, running, and jumping with a brand-new body. This episode is full of gentle wisdom, real talk about grief, and encouragement that joy and hope really can return after the darkest days. Topics Covered: The darkest days after diagnosis and what hopelessness felt like The moment surrender changed everything How weight training became part of her mental + physical healing Finding and clinging to glimmers of joy Raising siblings alongside a child with disabilities Faith, grief, and anchoring hope in heaven Connect with Brittni: Instagram: @brittnikarina @preppedaz 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!

    30 min
  8. Smarter Speech: How Q-Voice Is Changing AAC for Families and Therapists with Lana Marcucio

    10/24/2025

    Smarter Speech: How Q-Voice Is Changing AAC for Families and Therapists with Lana Marcucio

    Lana is a mom, software developer, and fierce advocate who created Q-Voice, an AAC system built out of love, frustration, and deep understanding. When her daughter Quinn struggled to connect through traditional speech apps, Lana and her husband decided to build something better—something intuitive, visual, and human. In this episode, we talk about: The real-life limitations of traditional AAC systems How Q-Voice uses GIFs, emojis, and real-world icons to keep learners engaged Built-in data tracking that actually helps shape speech goals The AI feature that speeds up sentence formation and keeps communication flowing Why parent involvement and design simplicity are key to AAC success Whether you’re a parent, SLP, or educator, this episode is full of hope and practical inspiration for making communication easier—and more fun—for everyone. Learn more or try Q-Voice: qvoice.app Follow Lana on Instagram: https://www.instagram.com/tigerishmom/ Follow Q-Voice on Instagram: https://www.instagram.com/qvoice.app/

    43 min
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Trailer

5
out of 5
279 Ratings

About

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.

Information

  • Creator
    Effie Parks
  • Years Active
    2019 - 2026
  • Episodes
    358
  • Rating
    Explicit
  • Copyright
    © 2019 - 2022 Effie Parks
  • Show Website
    Once Upon A Gene

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