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
324
Episodios
28 min 21 sec
Duración Promedio
Inglés
Idioma
Duración Total:
153 hr 9 min
Todos los Episodios
Being Mindful of the Sibling Experience with Founder of We Are Brave Together - Jessica Patay
09 Dic, 2021ONCE UPON A GENE - EPISODE 112 Being Mindful of the Sibling Experience with Founder of We Are Brave Together - Jessica Patay Jessica Patay has three kids- one born with prader-willi syndrome. She joins me today to discuss the …
Duración: 46 minThe Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger
02 Dic, 2021ONCE UPON A GENE - EPISODE 111 The Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger Elisa Seeger lost her son Aidan as a result of Adrenoleukodystrophy (ALD) disease. As she was sitting next to …
Duración: 34 minEffisode - Grief and Joy are Mingling this Holiday Season
30 Nov, 2021Intro music by Scott Holmes
Duración: 7 minTurkey Soup for the Soul and Stories About Rare Unicorns Who Show Up in Our Lives with Tyra Skibington and Tracey Beckett
25 Nov, 2021ONCE UPON A GENE - EPISODE 110 Turkey Soup for the Soul and Stories About Rare Unicorns Who Show Up in Our Lives In this special Thanksgiving episode, Tyra Skibington and Tracey Beckett share stories of rare unicorns— people who …
Duración: 44 minA Rare Collection - Rare Disease Storytelling - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins
18 Nov, 2021ONCE UPON A GENE - EPISODE 109 A Rare Collection - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly …
Duración: 13 minEffisode - Find the Connection
16 Nov, 2021Intro music by Scott Holmes
Duración: 5 minFinding Hope From Diagnosis to Action - LMNA Related Congenital Muscular Dystrophy - Hannah Lowe
11 Nov, 2021ONCE UPON A GENE - EPISODE 108 Finding Hope: From Diagnosis to Action - LMNA Related Congenital Muscular Dystrophy - Hannah Lowe Hannah Lowe is the President and Co-Founder of the L-CMD Research Foundation. Her son Austin has a rare …
Duración: 31 minThe Joy Doesn't Need to be Ambiguous Even Though The Grief is with Rare Merrf Disorder Mom - Jessica Fein
04 Nov, 2021ONCE UPON A GENE - EPISODE 107 The Joy Doesn't Need to be Ambiguous Even Though The Grief Is - Rare MERRF Syndrome Mom Jessica Fein Jessica Fein is the mom to three children. Her middle child, 15 year old …
Duración: 40 minEffisode - Cinderella, Cinderella
02 Nov, 2021Intro music by Scott Holmes
Duración: 4 minRare Book Club with Co-Host Patti Hall - Featuring Heather Lanier and Her Book, Raising a Rare Girl
28 Oct, 2021ONCE UPON A GENE - EPISODE 106 Rare Book Club with Co-Host Patti Hall - Featuring Heather Lanier and Her Book, Raising a Rare Girl Fellow rare moms, Patti Hall and Heather Lanier have shared their journeys in their memoirs. …
Duración: 44 min
