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
Relief and Inspiration for Mothers of Children with Rare Diseases with Angel Aid Cares Founder - Cristol O'Loughlin
27 May, 2021ONCE UPON A GENE - EPISODE 084 Relief and Inspiration for Mothers of Children with Rare Diseases with Angel Aid Cares Founder - Cristol O’Loughlin Angel Aid Cares works to provide connection, relief and support to caregivers. The founder, Cristol …
Duración: 57 minAdvocates Come in Small Packages - My Life with Blau Syndrome with Keira Howell
20 May, 2021ONCE UPON A GENE - EPISODE 083 Advocates Come in Small Packages - My Life With Blau Syndrome With Keira Howell Keira Howell is a twelve year old living with Blau Syndrome joining me to share her story of living …
Duración: 20 minEffisode - Unexpected Moments in the Stairwell
18 May, 2021Intro music by Scott Holmes
Duración: 5 minRare Disease - The Ultimate Special Teams with Uplifting Athletes with Rob Long
13 May, 2021ONCE UPON A GENE - EPISODE 082 Rare Disease - The Ultimate Special Teams with Uplifting Athletes with Rob Long Rob Long is the Executive Director at Uplifting Athletes and is a rare brain cancer survivor. His passion and drive …
Duración: 40 minRare Disease Adoption with Josh and Monica Poynter
06 May, 2021ONCE UPON A GENE - EPISODE 081 Rare Disease Adoption with Josh and Monica Poynter Josh and Monica Poynter have a son named Tag with severe Hemophilia Type A, a rare genetic disease which makes him vulnerable to prolonged bleeding. …
Duración: 27 minEffisode - Empathy Puts Some Pep in Your Step
04 May, 2021Intro music by Scott Holmes
Duración: 7 minRare Disease and Grief - Its Ok That You're Not Ok with Megan Devine
29 Abr, 2021ONCE UPON A GENE - EPISODE 080 Rare Disease and Grief - It’s OK That You’re Not OK with Megan Devine Megan Devine is the author of It's OK That You're Not OK, a psychotherapist, a grief advocate and communication …
Duración: 1 hr 2 minCreating Space for Mental Health for Men Living with Rare Diseases with David Ross
22 Abr, 2021David Ross is a patient advocate, passionate about mental health and creating space for males experiencing mental health struggles. His activism began in 2017 when he was diagnosed with a rare disease called Cowden syndrome. He became dedicated to raising …
Duración: 27 minEffisode - Adventures in the Grocery Store
20 Abr, 2021Intro music by Scott Holmes
Duración: 10 minMedia with a Mission with Believe Limited CEO Patrick James Lynch
15 Abr, 2021Media with a Mission with Believe Limited CEO Patrick James Lynch Patrick James Lynch has to inject himself with medication every other day because his liver doesn't produce a protein that helps his blood vessels seal when they burst. He …
Duración: 40 min
