Once Upon A Gene
Sobre este podcast
Descripción del podcast
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.
Autor: Effie Parks
Duración Total:
160 hr 13 min
Todos los episodios
The Critical Role of Newborn Screening - Rare Mom Alison Breitbarth and Infantile Pompe Disease
12 May, 2022ONCE UPON A GENE - EPISODE 134 The Critical Role of Newborn Screening - Rare Mom Alison Breitbarth and Infantile Pompe Disease Alison Breitbarth's son was the first baby in the state of Indiana to be screened for Pompe Disease …
Duración: 37 minEffisode - I Don't Like That
03 May, 2022Intro music by Scott Holmes
Duración: 4 minRare Disease Caregiving Post Childhood with Rare Mom and Primary Ciliary Dyskinesia Advocate Karen McEwen
28 Abr, 2022ONCE UPON A GENE - EPISODE 132 Rare Disease Caregiving Post Childhood with Rare Mom and Advocate Karen McEwen Karen McEwen has an 18 year old daughter with laryngeal cleft primary ciliary dyskinesia (PCD). Her and her daughter have been …
Duración: 40 minKelley Coleman - Author of You will Feel Better - A Guidebook for Rare Disease Parents
21 Abr, 2022ONCE UPON A GENE - EPISODE 131 Kelley Coleman - Author of You will Feel Better - A Guidebook for Rare Disease Parents Kelley Coleman is a mom and writer who is creating a series of books and other helpful …
Duración: 34 minEffisode - Gimme a Break, Spring Break
19 Abr, 2022Intro music by Scott Holmes
Duración: 4 minA Rare Collection - Penny For Your Thoughts
14 Abr, 2022ONCE UPON A GENE - EPISODE 130 A Rare Collection - Penny for your Thoughts There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing …
Duración: 18 minSelf Care for Your Healthcare with Ehlers Danlos Patient and Ms. Wheelchair Washington USA - Sarah Tompkins
07 Abr, 2022ONCE UPON A GENE - EPISODE 129 Self Care for Your Healthcare with Ehlers Danlos Patient and Ms. Wheelchair Washington USA - Sarah Tompkins Ms. Wheelchair Washington USA 2022, Sarah Tompkins has Ehlers Danlos Syndrome (EDS), she does extensive rare …
Duración: 36 minEffisode - A Perfect Day for a Walk
05 Abr, 2022Intro music by Scott Holmes
Duración: 5 minSisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing
31 Mar, 2022ONCE UPON A GENE - EPISODE 128 Sisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing Heidi Edwards, President and Founder of Sisters’ Hope Foundation, has a family history of adult-onset …
Duración: 33 minBuilding 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 Mar, 2022ONCE UPON A GENE - EPISODE 127 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 Marissa Bishop's son Gregory was born with …
Duración: 40 min
