Once Upon A Gene Podcast By Effie Parks cover art

Once Upon A Gene

Once Upon A Gene

By: 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 Biographies & Memoirs Parenting & Families Relationships Social Sciences
Episodes
  • From Hopeless Grief to Heavenly Hope: Brittni Lamb on Surrender, Faith, and Raising a Son with Hereditary Spastic Paraplegia SPG3A

    From Hopeless Grief to Heavenly Hope: Brittni Lamb on Surrender, Faith, and Raising a Son with Hereditary Spastic Paraplegia SPG3A
    Apr 2 2026
    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!
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    30 mins
  • Smarter Speech: How Q-Voice Is Changing AAC for Families and Therapists with Lana Marcucio

    Smarter Speech: How Q-Voice Is Changing AAC for Families and Therapists with Lana Marcucio
    Oct 24 2025
    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/
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    43 mins
  • Why Genetic Testing Matters: The Case for Genetic Testing and the Start Genetic Movement - with Geraldine Bliss

    Why Genetic Testing Matters: The Case for Genetic Testing and the Start Genetic Movement - with Geraldine Bliss
    Oct 16 2025
    In this episode of Once Upon a Gene, host Effie Parks welcomes Geraldine Bliss — rare mom, co-founder of CureSHANK, and the powerhouse behind Start Genetic, a new movement empowering families to take control of their genetic testing journey. Geraldine shares her decades-long experience as mom to Charles, a 27-year-old living with Phelan-McDermid syndrome, and how one test unlocked a world of understanding, care, and connection. Together, Effie and Geraldine dig into the real-world impact of genetic testing — what to ask for, when to push for answers, and how knowing the cause changes everything. They cover: 🧬 When and how to pursue genetic testing or re-testing 🧩 How a diagnosis can transform care, support, and research 🚫 Common myths and roadblocks that stop families from getting tested 🧠 Why “not knowing” limits treatment options — and what to do about it 💪 Action steps and resources you can use today Effie and Geraldine leave listeners with a clear message: You don’t have to wait for the system to hand you answers. You can start genetic. ✨ Resources Mentioned: Start Genetic CureSHANK Phelan-McDermid Syndrome Foundation 💬 Quote from the Episode: “Getting a diagnosis doesn’t change who your child is — it changes what you can do for them.” — Geraldine Bliss
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    47 mins
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If you are a parent, grandparent, sibling, or friend of someone with a rare genetic disease or disorder, your life was turned upside down when your little one received the diagnosis. Effie Parks is the mom of a little boy with an ultra-rare disorder, and she went through the roller coaster of emotions after he was diagnosed. At first she felt isolated and frightened. She began to look for a community who would understand what her family was going through. She found it in podcasts. After a year of listening to others, she realized she wanted to start her own. The result was Once Upon A Gene, and if you are in the rare disorder world - as a family member, therapist, doctor, researcher, or just someone who wants to understand better, this is the podcast for you. It is sometimes somber, as parents tell of their journeys, sometimes enlightening, as practitioners and parents offer resources, and sometimes very funny, as Effie draws out her guests to share some of their might-as-well-laugh moments with their rare kiddos. All in all, this is a podcast you don't want to miss about a topic we all should know more about.

Unexpectedly fascinating, touching, and funny

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Effie is a gift to rare disease parents. Listening to her and her guests have helped me to feel less alone and more inspired to continue my advocacy journey. Thank you, Effie!

Comfort in a Podcast

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