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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.
360 episodios disponibles

Latest episodes of the podcast Once Upon A Gene

Mostrando página 12 de 18

Raising a Son with Batten Disease and the Importance of Never Giving Up with Project Sebastian Founder Christopher Velona 21/10/2021
Effisode - Two Disabled Dudes 19/10/2021
A Rare Collection - Rare Disease Storytelling with Felix Townsin, Erica Jolene Stearns, Brianna Colquitt, and Mahrynn McLaughlin 14/10/2021
How We Can Balance and Understand the Unique Struggles We Face with Caregiver Fatigue, Compassion Fatigue, and Decision Fatigue with Counselor Rose Reif 07/10/2021
Effisode - The Kids Do NAPA Center in Los Angeles 05/10/2021
Strength - How We View It, Define It and Move Through Life with Rare Disease and Chronic Illness with Marni Cartelli 30/09/2021
Finding Beauty and Connection When Raising a Medically Complex Kiddo with Melanie Dimmitt - Author of Special - Antidotes to the Obsessions that Come with a Child's Disability 23/09/2021
Effisode - Road Trip to NAPA Center 21/09/2021
A Rare Collection - Rare Disease Storytelling with Kyle Bryant, Jennifer Siedman, Liz Morris and Ashley Fortney Point 16/09/2021
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
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