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 - Friendship, Inclusion, and Tough Conversations
03 Nov, 2020Intro music by Scott Holmes
Duración: 8 minLiving With Chronic Pain - International Pain Foundation President Barby Ingle
22 Oct, 2020ONCE UPON A GENE - EPISODE 053 Living with Chronic Pain - International Pain Foundation President Barby Ingle Barby Ingle is a fierce advocate, the President of the International Pain Foundation, a chronic pain educator and advocate, motivational speaker, Amazon …
Duración: 38 minEffisode - Making Friends and Talking About Differences
20 Oct, 2020Music provided by Scott Holmes
Duración: 6 minEffisode - Merch, Napa Center, and Beach Adventures
06 Oct, 2020Into music by Scott Holmes
Duración: 6 minReflecting on 50 Episodes with Effie and Casey
01 Oct, 2020ONCE UPON A GENE - EPISODE 050 Reflecting on 50 Episodes with Effie and Casey It's the 50th episode of the Once Upon a Gene podcast and Casey and Effie reflect on their journey, past guests, experiences and the stories …
Duración: 18 minThanatophoric Skeletal Dysplasia with Ashequka Lacey
24 Sep, 2020Thanatophoric Skeletal Dysplasia with Ashequka Lacey Ashequka Lacey is a fierce mama bear to Jakobi who was born with thanatophoric skeletal dysplasia which results from a mutation in the FGFR3 gene. Thanatophoric dwarfism is a severe skeletal disorder, but Jakobi …
Duración: 35 minFake It Til You Make It - Public Speaking, Road Trips and Intensive Therapy
22 Sep, 2020Intro music provided by Scott Holmes
Duración: 4 minWhat 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 min
