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
332
Episodios
28 min 37 sec
Duración Promedio
Inglés
Idioma
Duración Total:
158 hr 24 min
Todos los Episodios
Effisode - Show Your Stripes With Us This Rare Disease Day
23 Feb, 2021Intro by Scott Holmes
Duración: 5 minCure VCP With Rare Disease Trailblazer - Nathan Peck
18 Feb, 2021Nathan Peck is a dadvocate living with an adult onset disease. He's also the Founder and CEO of Cure VCP Disease. Through Cure VCP Disease, Nathan and his wife Allison are committed to bringing together patients, caregivers, researchers, pharmaceutical companies …
Duración: 28 minBen's Friends A Rare Disease Social and Support Platform with Ben Munoz
11 Feb, 2021Rare Disease Day is on Sunday, February 28th, 2021 and I'd love to know how you're celebrating and what Rare Disease Day means to you. Share a short voicemail message with me here! Ben Munoz is the President and Co-Founder …
Duración: 21 minEffisode - A Child's Imagination
09 Feb, 2021Intro music by Scott Holmes
Duración: 4 minConnecting the Dots From Patients to Researchers with Jason Colquitt - CEO of Across Healthcare
04 Feb, 2021Jason Colquitt is the CEO of Across Healthcare and he has 20 years experience in the healthcare technology field where his work has caused a positive disruption within the healthcare industry. He was diagnosed with carnitine palmitoyltransferase type II deficiency …
Duración: 25 minHippotherapy and Adaptive Riding with Little Bit Therapeutic Riding Center
28 Ene, 2021I have asked Ford's therapists, Kelsie McGladrey and Christina Reyer to join me to discuss what therapies we should be doing with our kids and to talk in depth about hippotherapy- physical, occupational and speech therapy that utilizes the natural …
Duración: 26 minEffisode - Growth and Smash Cakes
26 Ene, 2021Intro music by Scott Holmes
Duración: 6 minRare Mama - Nikki McIntosh - Navigating Life with Rare
21 Ene, 2021Nikki 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 minBeginners 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 min
