Once Upon A Gene
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
324
Episodios
28 min 21 sec
Duración Promedio
Inglés
Idioma
Duración Total:
153 hr 9 min
Todos los Episodios
Beginners Guide to Rare Disease - Anecdotes For Those Early Days of Diagnosis with Daniel DeFabio
14 Ene, 2021Daniel DeFabio and I are having a parent-to-parent discussion and bringing you guidance if you are a newly diagnosed family. We'll give you insight into our journeys, things that helped us along the way and ways we learned to cope …
Duración: 45 minEffisode - Never Underestimate the Determination of Your Child
12 Ene, 2021Intro music by Scott Holmes
Duración: 10 minSeth Rotberg Founder of Our Odyssey and His Mental Health Surrounding a Huntington’s Disease Diagnosis
07 Ene, 2021Our Odyssey is an organization that supports young adults living with rare disease and chronic illness. The founder of Our Odyssey, Seth Rotberg, is passionately driven by his mother's battle with a rare genetic disease called Huntington's Disease (HD). At …
Duración: 37 minThe Life of an Angel Diagnosed with Blau Syndrome with Cheryl-Lynn Townsin
31 Dic, 2020Cheryl-Lynn Townsin is the mom to Lexi and Felix and the Director of the film, Me, My Sister and Blau. I fell in love with this family when I saw their film and their story has really stuck with me. …
Duración: 52 minEffisode - The Magic of Christmas
29 Dic, 2020Music provided by Scott Holmes
Duración: 7 minCookies4Cures with Dana Perella
24 Dic, 2020Dana Perella has raised almost $200,000 to help fund research for rare pediatric diseases through Cookies4Cures. EPISODE HIGHLIGHTS Tell me where you're from and how old you are. I live in Boulder, Colorado and I'm 10 years old. What is …
Duración: 19 minThe Glass Child - Being a Sibling to My Rare Disease Sisters with Madison McLaughlin
17 Dic, 2020As a young girl, Madison McLaughlin made her way to LA to pursue acting and she's held roles in Chicago PD, Supernatural and Arrow. But she's also a rare disease super hero and celebrity in our community- the rare disease …
Duración: 53 minEffisode - Family Dinner
15 Dic, 2020Music provided by Scott Holmes
Duración: 7 minPediatric Occupational Therapy with OT4Lyfe - Sarah Putt
10 Dic, 2020Sarah Putt is the host of the OT4Lyfe Podcast, where she interviews thought leaders in the occupational therapy community. Sarah is discussing early intervention and answering questions about her profession and how it benefits families like ours. EPISODE HIGHLIGHTS Tell …
Duración: 51 minEffisode - Caregiver Personal Trainer Wanted
01 Dic, 2020Intro music by Scott Holmes
Duración: 7 min
