Once Upon A Gene

Once Upon A Gene

Por: Effie Parks
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.
345 episodios disponibles

Latest episodes of the podcast Once Upon A Gene

Mostrando página 12 de 18

Strength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care - Donovan Quill 09/09/2021
Effisode - Ford Goes to Kindergarten 07/09/2021
Five Common Errors Made by Recently Diagnosed, Emotionally Overwhelmed Families Without Monetary Resources or Connections with Perlara Founder and CEO - Ethan Perlstein 02/09/2021
A Mother's Story of Finding Your People, Accepting a Diagnosis and Loving Her Kid for Exactly Who She is with Jordan's Guardian Angels Mom - Carole Bakhos 26/08/2021
Effisode - From the Sidelines 24/08/2021
Finding Peace and New Energy to Dig Deeper After 18 Years Undiagnosed with Billie Short 19/08/2021
A Rare Collection - Rare Disease Storytelling - Skin In the Game with Adam Johnson, Nathan Peck and Marni Cartelli 12/08/2021
Effisode - Rare and Relatable - Rare Disease Stories on Clubhouse with Effie Parks and Bo Bigelow 10/08/2021
The 12 Commandments to guide you when you're starting a rare disease patient advocacy group - With Nasha Fitter and Mike Graglia 05/08/2021
Leading the World Gene Therapy Program for CTNNB1 With Fellow Rare Mama - Špela Miroševič 29/07/2021
Effisode - Your Kids, My Kids - They're All Perfect 27/07/2021
Enabling Rare Disease Treatments with Sanath Kumar Ramesh - Founder & CEO of OpenTreatments 22/07/2021
A Rare Collection- Re-Runs with Patrick James Lynch, Anna Laurent and Michelle Morganoff 15/07/2021
Effisode - Family Camp, Annoying Brothers, and the Doom of Packing 13/07/2021
Mental Health and living with chronic stress with Rare Disease Dad and Psychologist, Al Freedman, Ph.D 08/07/2021
Discovering New Treatments for Rare Genetic Diseases with Modelis CEO and Co-Founder James Doyle 01/07/2021
Effisode - Heatwaves and a Happy Birthday 29/06/2021
Living with Persistent Uncertainty without a Rare Disease Diagnosis with Meghan Halley 24/06/2021
A Rare Collection - Superheroes 17/06/2021
Effisode - Making Cents of it All 15/06/2021
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