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 6 de 18

Helping Undiagnosed Patients Who Experience Symptoms of Rare Diseases Find Answers with Free Genetic Testing in a Matter of Weeks with Probably Genetic CEO Lukas Lange 06/04/2023
Effisode - There's No Crying In Baseball 04/04/2023
Patients and Caregivers Being Compensated to Tell Their Stories and Get Connected to Research Opportunities with Rare Patient Voice Founder Wes Michael 30/03/2023
Take Part Founders and PYROXD-1 Parents - Matt and Maria Granados 23/03/2023
Effisode - Wheelchairs and Walls 21/03/2023
A Rare Collection - Exhausted and Energized 16/03/2023
Real Rare Mama Shop Talk - Deciding What We Share About Our Lives and Recognizing How Far We've Come with Each Passing Year with Alyssa Poskarbiewicz CHARGE Syndrome Mom 09/03/2023
Love, Hope and Cure SYNGAP 28/02/2023
Every Patient Matters - Discovering, Developing, and Providing Experimental ASO Treatments to Nano-Rare Patients for Free with n-Lorem Founder and CEO Stan Crooke 23/02/2023
Effisode - Rare Disease Day Events 22/02/2023
A Rare Collection - To the Moon and Back 16/02/2023
Honoring a Husbands Legacy by Finishing His Work on a Documentary About Rare Disease Acute Flaccid Myelitis and Her Own Grief Along the Way with Sarah Potter 09/02/2023
Effisode - Barbara Is Real 07/02/2023
From Cancer Biologist to Rare Disease Mom - Digging Into the Data to Better Understand SCN8A with Madeleine Oudin PhD - Professor of Biomedical Engineering at Tufts 02/02/2023
Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella 26/01/2023
Effisode - Seizures Are Stupid 24/01/2023
A Rare Collection - New Beginnings 19/01/2023
Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO Dadvocate Andrés Treviño 12/01/2023
Effisode - The Friendship Circle 10/01/2023
Being Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel 05/01/2023
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