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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 3 de 18

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
Understanding Genetic Counseling - Essential Insights for Parents – Navigating Appointments, Referrals, Testing, and Insurance with Expert Abby Turnwald MS CGC 11/06/2024
The Power of Genetic Diagnosis - More Than Just a Label 06/06/2024
Balancing Rare Disease Advocacy and Family - Navigating the Complexities and Embracing Imperfections with Nikki Stusick 23/05/2024
Uniting Strengths - Rare Disease Collaboration on a Shared Patient Registry Through Sanford Cords with Cure Mito and Hope for PDCD Leaders Frances Muenzer Pimentel and Sophia Zilber 16/05/2024
Episode 228 - Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breakthroughs, and the Every Cure Initiative with Dr. David Fajgenbaum 09/05/2024
Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska 25/04/2024
From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland 18/04/2024
The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman 11/04/2024
The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed 04/04/2024
Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio 28/03/2024
Krabbe Disease with Kasey Feldt 21/03/2024
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