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 4 de 18

A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari 11/01/2024
Finding Strength In Every Step 08/01/2024
Pain Points on the Disorder Channel with Daniel DeFabio and Bo Bigelow -This Festivus, Let the Airing of Grievances Begin 21/12/2023
The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike Graglia 14/12/2023
GeneDX - A Genetic Diagnosis Matters with Gay Grossman and Paul Kruszka 08/12/2023
A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies 30/11/2023
Turkey Soup for the Soul 23/11/2023
Breaking Barriers in Brain Health with Tracy Dixon-Salazar, PhD 16/11/2023
Policy as a Pathway - Advocating for Rare Disease, Cri Du Chat, Disability and Palliative Care with Lindsey Topping - Schuetz 09/11/2023
Palliative Care & the Courageous Parent Network with Founder Blyth Lord 04/11/2023
Figuring Out How to Infuse Meaning in the Days After the Loss of a Child and the Daunting Task of What the Hell to do Now with Liz Morris 04/11/2023
Mastering the Art of the Supermarket Answer When Someone Asks, How Are You with Jennifer Siedman 02/11/2023
From Heartbreak to Hope - With CEO of Parent Project Muscular Dystrophy, Pat Furlong 26/10/2023
Effisode - The Irony of it All 24/10/2023
These Two Rare Disease Parents Never Met Until Now and Have Everything In Common - Chronic Compassion Chronicles with Kim Gilsdorf and Daniel DeFabio 19/10/2023
Utilizing Child Life Specialists - Empowering Rare Disease and Medically Complex Families in Hospitals Nationwide with Child Life On Call Founder - Katie Taylor 12/10/2023
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments 05/10/2023
Effisode - 2023 SynGAP Cannonball for a Cure 03/10/2023
Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens 28/09/2023
Navigating Parenthood as a Rare Mom - Expert Insights into Special Needs Financial Planning with Mary McDirmid from Special Abilities Network 21/09/2023
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