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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 10 de 18

Effisode - I Don't Like That 03/05/2022
Rare Disease Caregiving Post Childhood with Rare Mom and Primary Ciliary Dyskinesia Advocate Karen McEwen 28/04/2022
Kelley Coleman - Author of You will Feel Better - A Guidebook for Rare Disease Parents 21/04/2022
Effisode - Gimme a Break, Spring Break 19/04/2022
A Rare Collection - Penny For Your Thoughts 14/04/2022
Self Care for Your Healthcare with Ehlers Danlos Patient and Ms. Wheelchair Washington USA - Sarah Tompkins 07/04/2022
Effisode - A Perfect Day for a Walk 05/04/2022
Sisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing 31/03/2022
Building a Different Kind of Motherhood Experience Than We Had Anticipated with CDKL5 Deficiency Disorder Mom and Founder of Art For Hope Love Cure, Marissa Bishop 24/03/2022
Effisode - Grocery Store Answers 22/03/2022
A Rare Collection - Unexpected Findings 17/03/2022
A Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure - Katie Lloyd 10/03/2022
Effisode - Moments 08/03/2022
Adapting and Collaborating to Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere 03/03/2022
Effisode - The Unicorns - Random Acts of Kindness in the Rare Community 22/02/2022
A Rare Collection - This Is Us 17/02/2022
How the Caregivers Mental Health and Physical Well-Being are Impacted Right Alongside Our Rare Disease Kiddos with Advocate and Co-Founder of Hello Sleuth - Sehreen Noor Ali 10/02/2022
Effisode - Bathroom Floor Moments 08/02/2022
What Happens Now - Baby Boy is a Medical Miracle After Being Treated for Spinal Muscular Atrophy Type 1 with Kathryn Alexander 03/02/2022
One of the Youngest Children to be Given Treatment for Spinal Muscular Atrophy I with Kathryn Alexander 27/01/2022
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