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
Effisode - Barbara Is Real
07 Feb, 2023Intro music by Scott Holmes
Duración: 4 minFrom Cancer Biologist to Rare Disease Mom - Digging Into the Data to Better Understand SCN8A with Madeleine Oudin PhD - Professor of Biomedical Engineering at Tufts
02 Feb, 2023ONCE UPON A GENE - EPISODE 172 From Cancer Biologist to Rare Disease Mom - Digging Into the Data to Better Understand SCN8A with Madeleine Oudin PhD - Professor of Biomedical Engineering at Tufts Madeleine Oudin is a scientist and …
Duración: 28 minNever Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella
26 Ene, 2023ONCE UPON A GENE - EPISODE 171 Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella Julia Taravella is a mom to two adult children, …
Duración: 53 minEffisode - Seizures Are Stupid
24 Ene, 2023Intro music by Scott Holmes
Duración: 5 minHappiness Is Meant to Be Shared with Author, Storyteller, and NEMO Dadvocate Andrés Treviño
12 Ene, 2023ONCE UPON A GENE - EPISODE 169 Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO dadvocate Andrés Treviño Andrés Treviño is a dadvocate, author and storyteller. His story is full of twists and turns and even moving …
Duración: 57 minEffisode - The Friendship Circle
10 Ene, 2023Intro music by Scott Holmes
Duración: 5 minBeing Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel
05 Ene, 2023ONCE UPON A GENE - EPISODE 168 Being Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel I met Payal Patel at the 2022 Global Genes Patient Advocacy Summit. She's digging in and getting …
Duración: 30 minCare Team Prescription - The Importance of Clinical Pharmacists with Chase Palmer
29 Dic, 2022ONCE UPON A GENE - EPISODE 167 Care Team Prescription - The Importance of Clinical Pharmacists with Chase Palmer Chase Palmer is a pharmacist on the board of Alström Syndrome International. In rare disease, we need all the help we …
Duración: 28 minEffisode - Rare Disease Day 2023
27 Dic, 2022Intro music by Scott Holmes
Duración: 2 minA Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD
22 Dic, 2022ONCE UPON A GENE - EPISODE 166 A Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD Dr. Wendy Kay Chung cares deeply about rare kids and …
Duración: 36 min
