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 2 de 18

Chasing Glimmers - From Grief to Glitter: Parenting Through Infantile MLD and Embracing Life’s Full Spectrum - with Megan Gillet 19/12/2024
The Gift of Grace: A Holiday Heart-to-Heart for Caregivers 12/12/2024
Grateful Reflections for Epilepsy Awareness Month: Parents Share Love, Lessons, and Insights from the Dravet Syndrome Community 27/11/2024
Ready for Take Off: Mission for Accessible Air Travel & Disability Advocacy, with Mindy Henderson 14/11/2024
The Unique Expertise of a Genetic Counselor - Helping Rare Disease Individuals and Families Navigate Through Complex Emotions and Circumstances Like Guilt, Grief, and Shame with Mary-Frances Garber 31/10/2024
Hospital Survival Kit - Advocating for Your Child Without Losing Yourself 17/10/2024
Real-World Self-Care for Caregivers - Tiny Wins, Small Shifts, and Taking Back Your Power 10/10/2024
Finding Strength in Friendship - Building In-Person Connections for Special Needs Moms with Colorado Mama Tribe - Mariah Gillaspie 26/09/2024
Beginners Guide to Rare Disease - Wisdom from Others Who Have Been There 19/09/2024
Chasing Glimmers - Electric Love Disability Retreats 12/09/2024
Choosing Friends as a Rare Disease Parent - Building a Supportive Circle with Genuine Connections 05/09/2024
Chasing Glimmers - Whats Glimmering with Katie Lloyd 29/08/2024
A Mother's Mission - Project Baby Lion, ASO Therapy and the TNP02 Foundation with Yiwei She 22/08/2024
Navigating Physical and Emotional Stress and Noticing Where It Shows Up In Our Body As A Rare Disease Caregiver - With Christy Foster 15/08/2024
Where the Glimmers Can Surface 08/08/2024
Join Us for The Global Genes Week In Rare 01/08/2024
Rare Disease Research - Insights from Charles River Labs with Roxana Redis and David Fischer 25/07/2024
Rare Connections in NMOSD (Neuromyelitis Optics) - Finding Strength in Community and the Power in Asking for Help with Craig Klein 18/07/2024
Chasing Glimmers - Illuminating Hope and Lessons in the Rare Disease Journey - Finding Glimmers for a Happier, Healthier Life with Katie Lloyd 11/07/2024
Are You Worried About Your Baby's Development - Enroll in Project FIND-OUT - You May Qualify for Free Whole Genome Sequencing 04/07/2024
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