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
Why a Diagnosis Matters with HNRNPH2 Rare Mom Angela Lindig
10 Jun, 2021ONCE UPON A GENE - EPISODE 086 Why a Diagnosis Matters with HNRNPH2 Rare Mom Angela Lindig Angela Lindig's daughter had a diagnosis of Atypical Rett for years, but was recently diagnosed with HNRNPH2. Angela runs Idaho Parents Unlimited, which …
Duración: 36 minHelping to Further the Patient Impact of Genomics with DadVocate and Genome Scientist at Congenica - Charles Steward
03 Jun, 2021ONCE UPON A GENE - EPISODE 085 Helping to Further the Patient Impact of Genomics with DadVocate and Genome Scientist at Congenica - Charles Steward Charles Steward was one of the first scientists to work on the human genome project, …
Duración: 30 minEffisode - Putting the Play in Playground with DadVocate - Casey Parks
01 Jun, 2021Intro Music by Scott Holmes
Duración: 7 minRelief 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 min
