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
Temas populares:
rare diseases rare disease family parenting patient advocacy disability familia child development family support communityDuración Total:
160 hr 13 min
Todos los episodios
What is Chronically Surviving with Marcelle Longlade
17 Sep, 2020What is Chronically Surviving with Marcelle Longlade Marcelle Longlade is living with multiple rare diseases. Her platform, Chronically Surviving connects community, offers accessible yoga and other healing practices and services. EPISODE HIGHLIGHTS Can you tell me how you became involved …
Duración: 33 minCiitizen - Take Control of Your Own Medical Records and Advance Research with Nasha Fitter
10 Sep, 2020Ciitizen - Take Control of Your Own Medical Records and Advance Research with Nasha Fitter Nasha Fitter is the mother of three daughters, one of which was diagnosed with a rare disease called FOXG1. After her daughter's diagnosis, she got …
Duración: 30 minSchool Busses, Road Trips and Friendship
08 Sep, 2020A Family Plagued with Rare Genetic Disease, Adrenoleukodystrophy with Diane Kane
03 Sep, 2020A Family Plagued with Rare Genetic Disease, Adrenoleukodystrophy with Diane Kane If you haven’t listened to Episode 38, Rare Like Us with Taylor Kane, go back and listen to that episode here. Taylor Kane's mom, Diane Kane, had two toddlers …
Duración: 27 minTwo Disabled Dudes - Kyle Bryant and Sean Baumstark
27 Ago, 2020Two Disabled Dudes - Kyle Bryant and Sean Baumstark When I became a part of the rare disease community after Ford was born, I didn't feel like I had any community at all. After Ford was born, I felt less …
Duración: 36 minRare Together, Watch Together - Film Selections from The Disorder Channel in Partnership with Global Genes
26 Ago, 2020Rare Together Watch Together - Film Selections from The Disorder Channel in Partnership with Global Genes Dan DeFabio and Bo Bigelow founded The Rare Disease Film Festival and have just created The Disorder Channel, accessible through Amazon Fire and Roku. …
Duración: 27 minEffisode - Let Me Tell You About My Big Brother
25 Ago, 2020A Mother's Crusade to Find a Cure for Her Son - Amber Freed, Founder and CEO, SLC6A1 Connect
20 Ago, 2020A Mother’s Crusade to Find a Cure for Her Son - Amber Freed Amber Freed is the mother of twins, Maxwell and Riley. At a year old, Maxwell was diagnosed with a disease too rare to have a formal name, …
Duración: 42 minDavid Fajgenbaum - Chasing My Cure - A Doctor's Race to Turn Hope into Action
13 Ago, 2020David Fajgenbaum - Chasing My Cure - A Doctor's Race to Turn Hope into Action David Fajgenbaum, MD, MBA, MSc, is a groundbreaking physician-scientist, disease hunter, speaker, and author of the national bestselling memoir, Chasing My Cure: A Doctor's Race …
Duración: 53 min
