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
Strength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care - Donovan Quill
09 Sep, 2021ONCE UPON A GENE - EPISODE 099 Strength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care - Donovan Quill Donovan Quill has made it his personal mission to help patients …
Duración: 33 minEffisode - Ford Goes to Kindergarten
07 Sep, 2021Intro music by Scott Holmes
Duración: 4 minFive Common Errors Made by Recently Diagnosed, Emotionally Overwhelmed Families Without Monetary Resources or Connections with Perlara Founder and CEO - Ethan Perlstein
02 Sep, 2021ONCE UPON A GENE - EPISODE 098 Five Common Errors Made by Recently Diagnosed, Emotionally Overwhelmed Families Without Monetary Resources or Connections with Perlara Founder and CEO - Ethan Perlstein Ethan Perlstein is Founder of Perlara and on Clubhouse every …
Duración: 42 minA Mother's Story of Finding Your People, Accepting a Diagnosis and Loving Her Kid for Exactly Who She is with Jordan's Guardian Angels Mom - Carole Bakhos
26 Ago, 2021ONCE UPON A GENE - EPISODE 097 A Mother's Story of Finding Your People, Accepting a Diagnosis and Loving Her Kid for Exactly Who She is with Jordan's Guardian Angels Mom - Carole Bakhos Carole Bakhos' eight year old daughter …
Duración: 33 minEffisode - From the Sidelines
24 Ago, 2021Intro music by Scott Holmes
Duración: 6 minFinding Peace and New Energy to Dig Deeper After 18 Years Undiagnosed with Billie Short
19 Ago, 2021ONCE UPON A GENE - EPISODE 096 Finding Peace and New Energy to Dig Deeper After 18 Years Undiagnosed with Billie Short Billie Short is the mom of a 20 year old daughter that has an undiagnosed rare disease. She …
Duración: 27 minA Rare Collection - Rare Disease Storytelling - Skin In the Game with Adam Johnson, Nathan Peck and Marni Cartelli
12 Ago, 2021ONCE UPON A GENE - EPISODE 095 A Rare Collection- Skin in the Game with Adam Johnson, Nathan Peck and Marni Cartelli There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring …
Duración: 17 minEffisode - Rare and Relatable - Rare Disease Stories on Clubhouse with Effie Parks and Bo Bigelow
10 Ago, 2021Intro music by Scott Holmes
Duración: 4 minThe 12 Commandments to guide you when you're starting a rare disease patient advocacy group - With Nasha Fitter and Mike Graglia
05 Ago, 2021ONCE UPON A GENE - EPISODE 094 With The Mike and Nasha Part II FOXG1 advocate Nasha Fitter and SYNGAP1 advocate Mike Graglia are leaders in the rare disease community and two of the top parent leaders in the advocacy …
Duración: 48 minLeading the World Gene Therapy Program for CTNNB1 With Fellow Rare Mama - Špela Miroševič
29 Jul, 2021ONCE UPON A GENE - EPISODE 093 Leading the World Gene Therapy Program for CTNNB1 With Fellow Rare Mama - Špela Miroševič Špela Miroševič is a fellow CTNNB1 mama to a two year old named Urban. She's done a lot …
Duración: 39 min
