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 9 de 18

Effisode - Global Genes RARE Disease Patient Advocacy Summit 28/06/2022
Picking the Brain of a Rare Disease Dad - With CTNNB1 Dadvocate - Casey Parks 23/06/2022
A Rare Collection - Remember Who You Are 16/06/2022
Effisode - Find Your Fairy Godmother 14/06/2022
Episode 138 - When Your Child is Facing the Most Severe Form of Human Epilepsy You fight Until the Death - Literally - Chelsea's Hope Lafora Children Research Fund with Niki Markou and Jenifer Merriam 09/06/2022
Advancing Therapies for Rare Liver Diseases and Alagille Syndrome with FDA Approved LIVMARLI with Chris Peetz - CEO of Mirum Pharmaceuticals 02/06/2022
Effisode - Guilt - Ain't Nobody Got Time for That 31/05/2022
The Value of Intensive Therapy for Kids with Disabilities with Jessie Cline and Erin Garrison of Climb Intensive Pediatric Therapy 26/05/2022
A Rare Collection - Up At Night 19/05/2022
Effisode - RARE Entrepreneur Bootcamp Warriors 17/05/2022
The Critical Role of Newborn Screening - Rare Mom Alison Breitbarth and Infantile Pompe Disease 12/05/2022
Effisode - I Don't Like That 03/05/2022
Rare Disease Caregiving Post Childhood with Rare Mom and Primary Ciliary Dyskinesia Advocate Karen McEwen 28/04/2022
Kelley Coleman - Author of You will Feel Better - A Guidebook for Rare Disease Parents 21/04/2022
Effisode - Gimme a Break, Spring Break 19/04/2022
A Rare Collection - Penny For Your Thoughts 14/04/2022
Self Care for Your Healthcare with Ehlers Danlos Patient and Ms. Wheelchair Washington USA - Sarah Tompkins 07/04/2022
Effisode - A Perfect Day for a Walk 05/04/2022
Sisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing 31/03/2022
Building a Different Kind of Motherhood Experience Than We Had Anticipated with CDKL5 Deficiency Disorder Mom and Founder of Art For Hope Love Cure, Marissa Bishop 24/03/2022
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