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

Effisode - The Friendship Circle - Lilly and Ford

09 Mar, 2021

Intro music by Scott Holmes

Duración: 5 min

The Importance of Early Intervention with Kindering CEO Lisa Greenwald

04 Mar, 2021

ONCE UPON A GENE - EPISODE 072 The Importance of Early Intervention with Kindering CEO Lisa Greenwald Early intervention or birth to three are the vital services kids can receive in the beginning of their diagnosis journey. Dr. Lisa Greenwald …

Duración: 27 min

Accelerating Clinical Research - Harsha Rajasimha, Founder and CEO of Jeeva Informatics

25 Feb, 2021

After losing his child to a rare congenital disease in 2012, Harsha Rajasimha applied his years of post-doctoral genomics data research experience at National Institutes of Health to develop a technology platform to accelerate clinical research. As the Founder and …

Duración: 28 min

Effisode - Show Your Stripes With Us This Rare Disease Day

23 Feb, 2021

Intro by Scott Holmes

Duración: 5 min

Cure VCP With Rare Disease Trailblazer - Nathan Peck

18 Feb, 2021

Nathan 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 min

Ben's Friends A Rare Disease Social and Support Platform with Ben Munoz

11 Feb, 2021

Rare 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 min

Effisode - A Child's Imagination

09 Feb, 2021

Intro music by Scott Holmes

Duración: 4 min

Connecting the Dots From Patients to Researchers with Jason Colquitt - CEO of Across Healthcare

04 Feb, 2021

Jason 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 min

Hippotherapy and Adaptive Riding with Little Bit Therapeutic Riding Center

28 Ene, 2021

I 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 min

Effisode - Growth and Smash Cakes

26 Ene, 2021

Intro music by Scott Holmes

Duración: 6 min