Portada del podcast Once Upon A Gene por Effie Parks

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

335
Episodios
28 min 41 sec
Duración Promedio
Inglés
Idioma

Duración Total:

160 hr 13 min

Todos los episodios

Rare Mama - Nikki McIntosh - Navigating Life with Rare

21 Ene, 2021

Nikki McIntosh has been featured on The Disorder Channel in Life & Atrophy, a film about the day-to-day of raising a child with Spinal Muscular Atrophy and as a guest of Once Upon a Gene TV. She hosts a community …

Duración: 25 min

Beginners Guide to Rare Disease - Anecdotes For Those Early Days of Diagnosis with Daniel DeFabio

14 Ene, 2021

Daniel 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 min

Effisode - Never Underestimate the Determination of Your Child

12 Ene, 2021

Intro music by Scott Holmes

Duración: 10 min

Seth Rotberg Founder of Our Odyssey and His Mental Health Surrounding a Huntington’s Disease Diagnosis

07 Ene, 2021

Our 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 min

The Life of an Angel Diagnosed with Blau Syndrome with Cheryl-Lynn Townsin

31 Dic, 2020

Cheryl-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 min

Effisode - The Magic of Christmas

29 Dic, 2020

Music provided by Scott Holmes

Duración: 7 min

Cookies4Cures with Dana Perella

24 Dic, 2020

Dana 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 min

The Glass Child - Being a Sibling to My Rare Disease Sisters with Madison McLaughlin

17 Dic, 2020

As 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 min

Effisode - Family Dinner

15 Dic, 2020

Music provided by Scott Holmes

Duración: 7 min

Pediatric Occupational Therapy with OT4Lyfe - Sarah Putt

10 Dic, 2020

Sarah 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 min