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 10 de 18

Effisode - Grocery Store Answers 22/03/2022
A Rare Collection - Unexpected Findings 17/03/2022
A Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure - Katie Lloyd 10/03/2022
Effisode - Moments 08/03/2022
Adapting and Collaborating to Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere 03/03/2022
Effisode - The Unicorns - Random Acts of Kindness in the Rare Community 22/02/2022
A Rare Collection - This Is Us 17/02/2022
How the Caregivers Mental Health and Physical Well-Being are Impacted Right Alongside Our Rare Disease Kiddos with Advocate and Co-Founder of Hello Sleuth - Sehreen Noor Ali 10/02/2022
Effisode - Bathroom Floor Moments 08/02/2022
What Happens Now - Baby Boy is a Medical Miracle After Being Treated for Spinal Muscular Atrophy Type 1 with Kathryn Alexander 03/02/2022
One of the Youngest Children to be Given Treatment for Spinal Muscular Atrophy I with Kathryn Alexander 27/01/2022
Effisode - Oh Goody - Anxiety is Visiting 25/01/2022
Ambiguous Medical Plans - How to Figure Out a System Even When it Seems Impossible with Parvathy Raman Krishnan 20/01/2022
A Rare Collection - New Beginnings 13/01/2022
Effisode - Rare Disease Day 11/01/2022
A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen 06/01/2022
Create Conversation, Community, and Change with Author of Loving You Big - Leah Moore 30/12/2021
Effisode - The Kindness of Strangers 28/12/2021
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman 23/12/2021
A Rare Collection - Lullabies 16/12/2021
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