Portada del podcast Once Upon A Gene por Effie Parks

Once Upon A Gene

Sobre este podcast

Descripción del podcast

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.

Autor: Effie Parks

335
Episodios
28 min 41 sec
Duración Promedio
Inglés
Idioma

Duración Total:

160 hr 13 min

Todos los episodios

Effisode - Rare Disease Day Events

22 Feb, 2023

Intro music by Scott Holmes

Duración: 4 min

A Rare Collection - To the Moon and Back

16 Feb, 2023

ONCE UPON A GENE - EPISODE 174 A Rare Collection - To the Moon and Back There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, …

Duración: 22 min

Honoring a Husbands Legacy by Finishing His Work on a Documentary About Rare Disease Acute Flaccid Myelitis and Her Own Grief Along the Way with Sarah Potter

09 Feb, 2023

ONCE UPON A GENE - EPISODE 173 Honoring a Husband’s Legacy by Finishing His Work on a Documentary About Rare Disease Acute Flaccid Myelitis and Her Own Grief Along the Way with Sarah Potter Sarah Potter's husband Scott got sick …

Duración: 26 min

Effisode - Barbara Is Real

07 Feb, 2023

Intro music by Scott Holmes

Duración: 4 min

From Cancer Biologist to Rare Disease Mom - Digging Into the Data to Better Understand SCN8A with Madeleine Oudin PhD - Professor of Biomedical Engineering at Tufts

02 Feb, 2023

ONCE UPON A GENE - EPISODE 172 From Cancer Biologist to Rare Disease Mom - Digging Into the Data to Better Understand SCN8A with Madeleine Oudin PhD - Professor of Biomedical Engineering at Tufts Madeleine Oudin is a scientist and …

Duración: 28 min

Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella

26 Ene, 2023

ONCE UPON A GENE - EPISODE 171 Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella Julia Taravella is a mom to two adult children, …

Duración: 53 min

Effisode - Seizures Are Stupid

24 Ene, 2023

Intro music by Scott Holmes

Duración: 5 min

Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO Dadvocate Andrés Treviño

12 Ene, 2023

ONCE UPON A GENE - EPISODE 169 Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO dadvocate Andrés Treviño Andrés Treviño is a dadvocate, author and storyteller. His story is full of twists and turns and even moving …

Duración: 57 min

Effisode - The Friendship Circle

10 Ene, 2023

Intro music by Scott Holmes

Duración: 5 min

Being Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel

05 Ene, 2023

ONCE UPON A GENE - EPISODE 168 Being Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel I met Payal Patel at the 2022 Global Genes Patient Advocacy Summit. She's digging in and getting …

Duración: 30 min