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

One of the Youngest Children to be Given Treatment for Spinal Muscular Atrophy I with Kathryn Alexander

27 Ene, 2022

ONCE UPON A GENE - EPISODE 119 One of the Youngest Children to be Given Treatment for Spinal Muscular Atrophy I with Kathryn Alexander Kathryn Alexander is the mother of three kids and her rare disease story starts when she …

Duración: 54 min

Effisode - Oh Goody - Anxiety is Visiting

25 Ene, 2022

Intro music by Scott Holmes

Duración: 3 min

Ambiguous Medical Plans - How to Figure Out a System Even When it Seems Impossible with Parvathy Raman Krishnan

20 Ene, 2022

ONCE UPON A GENE - EPISODE 118 Ambiguous Medical Plans - How to Figure Out a System Even When it Seems Impossible with Parvathy Raman Krishnan Parvathy Krishnan joins me to discuss being an administrator for your kids and the …

Duración: 50 min

A Rare Collection - New Beginnings

13 Ene, 2022

ONCE UPON A GENE - EPISODE 117 A Rare Collection - New Beginnings 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, sharing a story …

Duración: 23 min

Effisode - Rare Disease Day

11 Ene, 2022

Duración: 3 min

A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen

06 Ene, 2022

ONCE UPON A GENE - EPISODE 116 A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen Luke Rosen is a dadvocate who founded the KIF1A organization to seek a cure for his daughter …

Duración: 49 min

Create Conversation, Community, and Change with Author of Loving You Big - Leah Moore

30 Dic, 2021

ONCE UPON A GENE - EPISODE 115 Create Conversation, Community, and Change with Author of Loving You Big - Leah Moore Leah Moore won a prestigious award for being teacher of the year in New York, she's the author of …

Duración: 42 min

Effisode - The Kindness of Strangers

28 Dic, 2021

Intro music by Scott Holmes

Duración: 6 min

The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman

23 Dic, 2021

ONCE UPON A GENE - EPISODE 114 The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman Noah Siedman was a big brother to Ben who …

Duración: 46 min

A Rare Collection - Lullabies

16 Dic, 2021

ONCE UPON A GENE - EPISODE 113 A Rare Collection- Lullabies 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, sharing a story with a …

Duración: 26 min