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 5 de 18

Effisode - The Unconventional Toothfairy 19/09/2023
Advocating with Heart - Striking the Balance Between Medical Insights and Personal Narratives - A Tribute to Valerie Marie with RING14 Co-Founder Yssa Dean DeWoody 14/09/2023
Rare Disease Dad Chronicles - From Stay-At-Home Fatherhood to My Mejo Co-Founder A Journey Through Costello Syndrome and Parenthood Challenges with Dadvocate - Ryan Sheedy 07/09/2023
Effisode - Summer Camp for Medically Complex Kids 05/09/2023
A Rare Collection - Schools Out for the Summer 27/07/2023
Anecdotes From a Rare Disease Dad of an Adult Son with NR4A2 with Joe Henry 20/07/2023
A Guide for Rare Disease Patient Advocacy Groups - Choosing and Designing a Patient Registry with Sophia Zilber 13/07/2023
Claudia Gonzaga Jauregui 06/07/2023
From the Rare Disease Bunker to Many More Birthdays - A Tale of a Gene Therapy that Cures her Daughter with AADC Deficiency - The First Spanish Patient - with Carolina Moreno 22/06/2023
A Rare Collection - A Father's Day Special - Amidst the Storm 15/06/2023
SCN8A Rare Mom - The Inch Stone Project and DEE-P Connections - Creating Better Tools, Resources and Research for the Most Severely Affected Families with Gabi Conecker 08/06/2023
Developing Personalized Therapeutics for Ultra Rare Patients with La Jolla Labs CEO Jeff Milton 01/06/2023
How Being a Mom to Twins with a Rare and Undiagnosed Condition Has Shaped Rare Mom, Scientist and Co-Founder of the MAST Genes Research Foundation with Dr. Kim Aldinger 25/05/2023
Effisode - Are We The Actors 23/05/2023
A Rare Collection - Keep Digging 18/05/2023
The Tréxō Robot and the Many Benefits of this Technology for Kids with Disabilities with the Founder and CEO Manmeet Maggu 11/05/2023
The Outlet - How Chris Anselmo Used Writing to Connect with Other Rare Disease Families and Come to Terms with His Own Diagnosis of Limb-Girdle Muscular Dystrophy 04/05/2023
A Rare Collection - Wishing Well 20/04/2023
Effisode - The Ultimate Rare Disease Resource Guide 18/04/2023
Doctor and Rare Disease Dad Is On A Mission to Accelerate Research and Drug Development Efforts for His Childs KCNT1 Epilepsy with Dadvocate Dr. Justin West 14/04/2023
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