Once Upon A Gene
Kids & Family Podcasts
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.
Location:
United States
Genres:
Kids & Family Podcasts
Description:
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.
Twitter:
@OnceUponAGene
Language:
English
Email:
podcasts@ctnnb1.org
Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska
Duration:00:51:53
From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland
Duration:00:45:12
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
Duration:00:46:33
The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed
Duration:00:28:47
Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio
Duration:00:51:20
Krabbe Disease with Kasey Feldt
Duration:00:29:20
BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay
Duration:00:38:03
A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action
Duration:00:17:01
Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini
Duration:00:43:25
James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child
Duration:00:53:26
More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade
Duration:00:51:07
Uniting Science and Hope - COMBINEDBrain and it's Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell
Duration:00:55:26
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
Duration:00:39:56
Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay
Duration:00:43:00
Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford
Duration:00:34:24
A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari
Duration:00:41:00
Finding Strength In Every Step
Duration:00:17:36
Pain Points on the Disorder Channel with Daniel DeFabio and Bo Bigelow -This Festivus, Let the Airing of Grievances Begin
Duration:00:11:56
The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike Graglia
Duration:00:49:03
GeneDX - A Genetic Diagnosis Matters with Gay Grossman and Paul Kruszka
Duration:00:45:12