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
324
Episodios
28 min 21 sec
Duración Promedio
Inglés
Idioma
Duración Total:
153 hr 9 min
Todos los Episodios
Enabling Rare Disease Treatments with Sanath Kumar Ramesh - Founder & CEO of OpenTreatments
22 Jul, 2021ONCE UPON A GENE - EPISODE 092 Enabling Rare Disease Treatments with Sanath Kumar Ramesh - Founder & CEO of OpenTreatments Sanath Kumar Ramesh’s son is one of only nine kids worldwide with an ultra-rare genetic disease called Sedaghatian Type …
Duración: 28 minA Rare Collection- Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff
15 Jul, 2021ONCE UPON A GENE - EPISODE 091 Episode 091 - A Rare Collection- Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series …
Duración: 18 minEffisode - Family Camp, Annoying Brothers, and the Doom of Packing
13 Jul, 2021Intro music by Scott Holmes
Duración: 4 minMental Health and living with chronic stress with Rare Disease Dad and Psychologist, Al Freedman, Ph.D
08 Jul, 2021ONCE UPON A GENE - EPISODE 090 Rare Disease Dad and Psychologist Al Freedman, Ph.D Al Freedman, Ph. D is a rare dad to a son with Spinal Muscular Atrophy (SMA), a psychologist who specializes in supporting families affected by …
Duración: 50 minDiscovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle
01 Jul, 2021ONCE UPON A GENE - EPISODE 089 Discovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle Exposed first hand to research of genetic diseases and the lack of information known, my guest quickly realized the …
Duración: 32 minEffisode - Heatwaves and a Happy Birthday
29 Jun, 2021Intro Music by Scott Holmes
Duración: 5 minLiving with Persistent Uncertainty without a Rare Disease Diagnosis with Meghan Halley
24 Jun, 2021ONCE UPON A GENE - EPISODE 088 Living with Persistent Uncertainty Without a Rare Disease Diagnosis - Meghan Halley I met Meghan Halley on the NORD Living Rare Living Stronger planning committee. She co-chairs the patient and family support group …
Duración: 34 minA Rare Collection - Superheroes
17 Jun, 2021ONCE UPON A GENE - EPISODE 087 A Rare Collection - Superheroes This is a new edition to the podcast that is built on the power of storytelling. This extra special first episode of A Rare Collection will be released …
Duración: 18 minEffisode - Making Cents of it All
15 Jun, 2021Intro music by Scott Holmes
Duración: 6 minWhy a Diagnosis Matters with HNRNPH2 Rare Mom Angela Lindig
10 Jun, 2021ONCE UPON A GENE - EPISODE 086 Why a Diagnosis Matters with HNRNPH2 Rare Mom Angela Lindig Angela Lindig's daughter had a diagnosis of Atypical Rett for years, but was recently diagnosed with HNRNPH2. Angela runs Idaho Parents Unlimited, which …
Duración: 36 min
