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 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 minEffisode 001
11 Ago, 2020WSU ROAR - Responsibility, Opportunities, Advocacy and Respect with Lisa Henniger
06 Ago, 2020WSU ROAR - Responsibility, Opportunities, Advocacy and Respect with Lisa Henniger Lisa Henniger is joining me to talk about Washington State University's ROAR program, which supports higher education for the disabled and neurodiverse. Lisa's son Evan, who has down syndrome, …
Duración: 30 minTime is Brain - SynGap Research Fund with Mike Graglia
30 Jul, 2020Time is Brain: SYNGAP Research Fund with Mike Graglia Bo Bigelow and Daniel DeFabio have started a TV channel called The Disorder Channel where you can see all their rare stories in one place. You can access the channel with …
Duración: 35 min
