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Hosted by Effie Parks · 🇺🇸 US · EN · 360 episodes
Established thought leaders with verified media credentials.
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.
Effie Parks hosts Once Upon A Gene, a society show with 360 episodes published.
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
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
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
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 Rin
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
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
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 a
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
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-rar
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 ap
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 gen
In this episode of Once Upon a Gene, Effie sits down with Dr. Maya Gosztyla from Brainstorm Therapeutics to explore one of the most exciting frontiers in rare disease research - organoids. These “mini brains in a dish” a
This episode of Once Upon a Gene is a little like a cafeteria tray - pick what feeds you and leave what doesn't. Chatting with the zesty, vivacious, and wildly insightful Emma Nadler - psychotherapist, author of The Unli
In this conversation, Wendy Chung discusses the evolution of understanding genetic conditions, particularly in relation to autism, and the role of Simons Searchlight in patient advocacy. She emphasizes the importance of
ONCE UPON A GENE - EPISODE 100 A Rare Collection- Because of You with Kyle Bryant, Jennifer Siedman, Liz Morris, and Ashley Fortney Point There's power in storytelling- for the listener and the storyteller. A Rare Collec
Discount Code for 20% off: ONCEUPONAGENE Chelsea and Amber of Lemon Cake—two fellow rare moms on a mission—pop in to remind you that even when seizures, meltdowns, and endless therapies feel like they’re winning, there’s
In this episode, Jeffrey Allen, a passionate advocate for rare disease awareness and a dedicated father to Lucas, who has creatine transporter deficiency. (CTD is also referred to as SLC6A8 Deficiency, CRTR, and X-linked
In this episode of Once Upon a Gene, I’m joined again by rare mom and powerhouse advocate Gay Grossman. Gay works at GeneDx—home to one of the largest clinical genomic databases—and she’s here to share two exciting updat
Turning Kids into Superheroes of Science with O’Ryan Health The world of pediatric autoimmune and rare diseases can feel isolating—especially when answers live behind hospital walls or research centers far from home. But
In this heartfelt conversation, Heather Straughter shares her profound journey through grief after the loss of her son, Jake. She discusses the pivotal moments that shaped her path, the importance of community support, a
Dr. Wendy Chung
clinical and molecular geneticist, Chief of Pediatrics at Boston Children's Hospital, Mary Ellen Avery Professor at Harvard Medical School · Boston Children’s Hospital
1 appearance on this show
Jeff Allen
Comedy and Inspiration from a "Class Act and a True Gentleman" · United Steelworkers Local 731
1 appearance on this show
Tim Coleman
1 appearance on this show
James Griffin
NSW Liberal MP, former Environment and Heritage Minister, current Shadow Minister for Energy, Climate Change, Digital AI, and Investment · Auto Shop Marketing Pros
1 appearance on this show
Mindy Henderson
Vice President of Disability Outreach and Empowerment · Muscular Dystrophy Association
1 appearance on this show
David Fischer
Tacoma Arts Live
1 appearance on this show
David Fajgenbaum
medical researcher and founder of Every Cure · Every Cure
1 appearance on this show
Daniel DeFabio
2 appearances on this show
Wes Michael
founder and president · Rare Patient Voice LLC
1 appearance on this show
Matt Granados
author of Motivate the Unmotivated and president of Life Pulse · Life Pulse, Inc.
1 appearance on this show
Sarah Potter
Celebrity Psychic Medium, Tarot Reader, and Professional Witch · Town of Chapel Hill
1 appearance on this show
Nicole Johnson
Chief Nursing and Patient Operations Officer · Nemours Children’s Health
1 appearance on this show
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Once Upon A Gene is hosted by Effie Parks. The show is categorised under society (culture) and has published 360 episodes.
Once Upon A Gene has published 360 episodes.
Once Upon A Gene regularly covers society, culture, personal. It sits in the society category, with a culture focus.
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Episodes of Once Upon A Gene average 42 minutes. a focused format where a clear narrative arc and tight preparation matter most.
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