Portada del podcast Once Upon A Gene por Effie Parks

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

335
Episodios
28 min 41 sec
Duración Promedio
Inglés
Idioma

Duración Total:

160 hr 13 min

Todos los episodios

Effisode - Your Kids, My Kids - They're All Perfect

27 Jul, 2021

Intro music by Scott Holmes

Duración: 5 min

Enabling Rare Disease Treatments with Sanath Kumar Ramesh - Founder & CEO of OpenTreatments

22 Jul, 2021

ONCE 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 min

A Rare Collection- Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff

15 Jul, 2021

ONCE 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 min

Effisode - Family Camp, Annoying Brothers, and the Doom of Packing

13 Jul, 2021

Intro music by Scott Holmes

Duración: 4 min

Mental Health and living with chronic stress with Rare Disease Dad and Psychologist, Al Freedman, Ph.D

08 Jul, 2021

ONCE 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 min

Discovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle

01 Jul, 2021

ONCE 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 min

Effisode - Heatwaves and a Happy Birthday

29 Jun, 2021

Intro Music by Scott Holmes

Duración: 5 min

Living with Persistent Uncertainty without a Rare Disease Diagnosis with Meghan Halley

24 Jun, 2021

ONCE 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 min

A Rare Collection - Superheroes

17 Jun, 2021

ONCE 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 min

Effisode - Making Cents of it All

15 Jun, 2021

Intro music by Scott Holmes

Duración: 6 min