Once Upon A Gene
Effie ParksAs 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... more
| Publishes | Twice monthly | Episodes | 363 | Founded | 7 years ago |
|---|---|---|---|---|---|
| Number of Listeners | Categories | Personal JournalsKids & FamilyParentingSociety & Culture | |||
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Latest Episodes
Laurel on Amelia, Friedrich’s Ataxia, and Choosing Joy in the Face of ProgressionLaurel shares her family’s experience raising Amelia, who was diagnosed with Friedrich’s ataxia at age 8 after early signs showed up around age 5. This conversation cove... more
Have you ever celebrated another child’s milestone while quietly wondering why your own child hasn’t reached it? Or caught yourself thinking, “Their kid can walk, talk, and eat - why do they think this is so hard?”
We don’t love admitting it. But ma... more
Colorado Mama Tribe invited me out to talk about storytelling. What I found was even more than I had hoped for. They did it. They figured it out - at least some of it. And what hasn’t been solved yet already has bones.
That’s the falling into place.... more
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... more
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Reviews
- Q-Voice discussion was fantastic
I loved the discussion with Lana Marcucio about Q-Voice. It’s inspiring to see what brilliant and dedicated parents can create! The AI features and the scripts have so much promise for anyone who has trouble speaking (including for anyone who has English as a second language). Thank you for exposing us to such interesting and creative individuals!
Apple Podcasts5DZDuck
United Statesa year ago - SO encouraging and relatable!
I absolutely LOVE this podcast. From the second I found it after my sons diagnosis I knew I had found a support system of real, wise, and encouraging support from Effie and community💗✨. I’ve even had the opportunity to meet Effie in real life and she is the real deal! Such a heart to encourage and bring caregivers together to make our journeys a little more joyful and help us feel not so alone. Forever grateful for Effie, this community and all the resources!
Apple Podcasts5BrittaLambUnited Statesa year ago - Power of community
Thank you for teaching us the power of community in rare disease! Your podcast is such a light in this world. You’ve inspired me to help establish a foundation for my family member 🩷
Apple Podcasts5review 838United Statesa year ago - Best podcast
This is the absolute best podcast for parents with kids with disabilities. Effie is such a positive and amazing mom, friend, and a leader. Her positive energy is very contagious.
Apple Podcasts5Kasia LawUnited States2 years ago - A Great podcast!
I love listening to the podcast! Effie’s understanding and connection with her guests allows them to share their stories in an authentic way! Her podcast is uplifting, informative, and inspiring! Anyone on their rare disease journey or in the space should listen to Once Upon A Gene!
Apple Podcasts5Jamesgriff3United States2 years ago
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Frequently Asked Questions About Once Upon A Gene
What is Once Upon A Gene about and what kind of topics does it cover?
A show focused on the lived experience of families navigating rare genetic conditions, blending personal journeys with practical advocacy, medical ethics, and tech-enabled advances. Recent episodes highlight caregiving resilience, archetype-based self-care for parents, AI-enabled therapies, genetic testing, and patient-centered research collaborations, with guests ranging from rare-disease parents to researchers and founders. The show tends to center community-building, hope, and actionable guidance for families, caregivers, and professionals involved in rare disease ecosystems. A standout thread is the emphasis on turning hardship into advocacy and collaboration, often tying personal stories to broader systemic change and research progress... more
Where can I find podcast stats for Once Upon A Gene?
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How many listeners does Once Upon A Gene get?
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What are the audience demographics for Once Upon A Gene?
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How many subscribers and views does Once Upon A Gene have?
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Which podcasts are similar to Once Upon A Gene?
These podcasts share a similar audience with Once Upon A Gene:
1. The Rare Life
2. Good Hang with Amy Poehler
3. The Mel Robbins Podcast
4. The Telepathy Tapes
5. All Things Sensory by Harkla
How many episodes of Once Upon A Gene are there?
Once Upon A Gene launched 7 years ago and published 363 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.
How do I contact Once Upon A Gene?
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Where can I see ratings and reviews for Once Upon A Gene?
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What guests have appeared on Once Upon A Gene?
Recent guests on Once Upon A Gene include:
1. Matt Abernethy
2. Hannah Lowe
3. Bryan Docobo
4. Steven Ringel
5. Brittni Lamb
6. Lana Marcucio
7. Geraldine Bliss
8. Maya Gosztyla
To view more recent guests and their details, simply upgrade your Rephonic account. You'll also get access to a typical guest profile to help you decide if the show is worth pitching.