Once Upon A Gene

Once Upon A Gene

Por: Effie Parks
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.
345 episodios disponibles

Latest episodes of the podcast Once Upon A Gene

Mostrando página 14 de 18

Effisode - The Friendship Circle - Lilly and Ford 09/03/2021
The Importance of Early Intervention with Kindering CEO Lisa Greenwald 04/03/2021
Accelerating Clinical Research - Harsha Rajasimha, Founder and CEO of Jeeva Informatics 25/02/2021
Effisode - Show Your Stripes With Us This Rare Disease Day 23/02/2021
Cure VCP With Rare Disease Trailblazer - Nathan Peck 18/02/2021
Ben's Friends A Rare Disease Social and Support Platform with Ben Munoz 11/02/2021
Effisode - A Child's Imagination 09/02/2021
Connecting the Dots From Patients to Researchers with Jason Colquitt - CEO of Across Healthcare 04/02/2021
Hippotherapy and Adaptive Riding with Little Bit Therapeutic Riding Center 28/01/2021
Effisode - Growth and Smash Cakes 26/01/2021
Rare Mama - Nikki McIntosh - Navigating Life with Rare 21/01/2021
Beginners Guide to Rare Disease - Anecdotes For Those Early Days of Diagnosis with Daniel DeFabio 14/01/2021
Effisode - Never Underestimate the Determination of Your Child 12/01/2021
Seth Rotberg Founder of Our Odyssey and His Mental Health Surrounding a Huntington’s Disease Diagnosis 07/01/2021
The Life of an Angel Diagnosed with Blau Syndrome with Cheryl-Lynn Townsin 31/12/2020
Effisode - The Magic of Christmas 29/12/2020
Cookies4Cures with Dana Perella 24/12/2020
The Glass Child - Being a Sibling to My Rare Disease Sisters with Madison McLaughlin 17/12/2020
Effisode - Family Dinner 15/12/2020
Pediatric Occupational Therapy with OT4Lyfe - Sarah Putt 10/12/2020
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