Once Upon A Gene
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
332
Episodios
28 min 37 sec
Duración Promedio
Inglés
Idioma
Duración Total:
158 hr 24 min
Todos los Episodios
A Rare Collection - New Beginnings
13 Ene, 2022ONCE 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 minEffisode - Rare Disease Day
11 Ene, 2022A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen
06 Ene, 2022ONCE 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 minCreate Conversation, Community, and Change with Author of Loving You Big - Leah Moore
30 Dic, 2021ONCE 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 minEffisode - The Kindness of Strangers
28 Dic, 2021Intro music by Scott Holmes
Duración: 6 minThe Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
23 Dic, 2021ONCE 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 minA Rare Collection - Lullabies
16 Dic, 2021ONCE 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 minEffisode - The Magic of Friendship at the North Pole
14 Dic, 2021Intro music by Scott Holmes
Duración: 6 minBeing Mindful of the Sibling Experience with Founder of We Are Brave Together - Jessica Patay
09 Dic, 2021ONCE UPON A GENE - EPISODE 112 Being Mindful of the Sibling Experience with Founder of We Are Brave Together - Jessica Patay Jessica Patay has three kids- one born with prader-willi syndrome. She joins me today to discuss the …
Duración: 46 minThe Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger
02 Dic, 2021ONCE UPON A GENE - EPISODE 111 The Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger Elisa Seeger lost her son Aidan as a result of Adrenoleukodystrophy (ALD) disease. As she was sitting next to …
Duración: 34 min
