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Once Upon A Gene
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.
ONCE UPON A GENE –EPISODE 278: His Son Was Diagnosed with Congenital Adrenal Hyperplasia (CAH) — A Dad’s Honest Story of Overwhelm, Faith, and Finding Hope Through Treatment w/ Matt Abernethy
Effie welcomes Matt Abernethy, a father and biotech executive whose story feels almost too perfectly timed to be real. Matt’s youngest son, Ian (now 13), was diagnosed with classic congenital adrenal hyperplasia (CAH) at age two. While navigating the overwhelm, fear, and daily stress of managing a rare disease, Matt received a cold recruiter call for a CFO role at Neurocrine Biosciences — a compan...
ONCE UPON A GENE – EPISODE 277: A Mother’s Son Was Diagnosed with the Rare, Debilitating Disease LMNA-Related Congenital Muscular Dystrophy (L-CMD) — A Mother’s Story of DNR Orders and How Those Decisions Change Over Time with Hannah Lowe
Hannah Lowe is back on the show. In this episode, Effie and Hannah discuss do not resuscitate orders for children with rare diseases. Hannah shares her experience with her son Austin and how the conversation around DNRs came up for their family. They talk about the decision-making process, how feelings around these choices can change over time, and why these conversations matter in the rare diseas...
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 stru...
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 comm...
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 ...
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, ...
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 eve...
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 get...
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 h...