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 11 de 18

Effisode - The Magic of Friendship at the North Pole 14/12/2021
Being Mindful of the Sibling Experience with Founder of We Are Brave Together - Jessica Patay 09/12/2021
The Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger 02/12/2021
Effisode - Grief and Joy are Mingling this Holiday Season 30/11/2021
Turkey Soup for the Soul and Stories About Rare Unicorns Who Show Up in Our Lives with Tyra Skibington and Tracey Beckett 25/11/2021
A Rare Collection - Rare Disease Storytelling - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins 18/11/2021
Effisode - Find the Connection 16/11/2021
Finding Hope From Diagnosis to Action - LMNA Related Congenital Muscular Dystrophy - Hannah Lowe 11/11/2021
The Joy Doesn't Need to be Ambiguous Even Though The Grief is with Rare Merrf Disorder Mom - Jessica Fein 04/11/2021
Effisode - Cinderella, Cinderella 02/11/2021
Rare Book Club with Co-Host Patti Hall - Featuring Heather Lanier and Her Book, Raising a Rare Girl 28/10/2021
Raising a Son with Batten Disease and the Importance of Never Giving Up with Project Sebastian Founder Christopher Velona 21/10/2021
Effisode - Two Disabled Dudes 19/10/2021
A Rare Collection - Rare Disease Storytelling with Felix Townsin, Erica Jolene Stearns, Brianna Colquitt, and Mahrynn McLaughlin 14/10/2021
How We Can Balance and Understand the Unique Struggles We Face with Caregiver Fatigue, Compassion Fatigue, and Decision Fatigue with Counselor Rose Reif 07/10/2021
Effisode - The Kids Do NAPA Center in Los Angeles 05/10/2021
Strength - How We View It, Define It and Move Through Life with Rare Disease and Chronic Illness with Marni Cartelli 30/09/2021
Finding Beauty and Connection When Raising a Medically Complex Kiddo with Melanie Dimmitt - Author of Special - Antidotes to the Obsessions that Come with a Child's Disability 23/09/2021
Effisode - Road Trip to NAPA Center 21/09/2021
A Rare Collection - Rare Disease Storytelling with Kyle Bryant, Jennifer Siedman, Liz Morris and Ashley Fortney Point 16/09/2021
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