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
Finding Strength in Friendship - Building In-Person Connections for Special Needs Moms with Colorado Mama Tribe - Mariah Gillaspie
26 Sep, 2024ONCE UPON A GENE - EPISODE 245 Finding Strength in Friendship - Building In-Person Connections for Special Needs Moms with Colorado Mama Tribe - Mariah Gillaspie Mariah Gillaspie is the mom of Abby and Emma, who both have a genetic …
Duración: 24 minBeginners Guide to Rare Disease - Wisdom from Others Who Have Been There
19 Sep, 2024A collection of voicemails from rare disease parents who relate to you situation.
Duración: 24 minChasing Glimmers - Electric Love Disability Retreats
12 Sep, 2024ONCE UPON A GENE - EPISODE 243 Chasing Glimmers - Electric Love Disability Retreats Chasing Glimmers is all about finding the small, hopeful moments that shine through the darkest of times. Like you, Katie and I know how challenging the …
Duración: 32 minChoosing Friends as a Rare Disease Parent - Building a Supportive Circle with Genuine Connections
05 Sep, 2024ONCE UPON A GENE - EPISODE 242 Choosing Friends as a Rare Disease Parent - Building a Supportive Circle with Genuine Connections I've been seeing so many online conversations around friendships lately and we've all experienced a ghost ship of …
Duración: 16 minChasing Glimmers - Whats Glimmering with Katie Lloyd
29 Ago, 2024ONCE UPON A GENE - EPISODE 241 Chasing Glimmers - What's Glimmering with Katie Lloyd Chasing Glimmers, is all about finding the small, hopeful moments that shine through the darkest of times. Like you, Katie and I know how challenging …
Duración: 31 minA Mother's Mission - Project Baby Lion, ASO Therapy and the TNP02 Foundation with Yiwei She
22 Ago, 2024ONCE UPON A GENE - EPISODE 240 A Mother's Mission - Project Baby Lion, ASO Therapy and the TNP02 Foundation with Yiwei She Yiwei She is a powerhouse mom to little Leo, the Founder of the TNP02 Foundation, a remarkable …
Duración: 34 minNavigating Physical and Emotional Stress and Noticing Where It Shows Up In Our Body As A Rare Disease Caregiver - With Christy Foster
15 Ago, 2024ONCE UPON A GENE - EPISODE 239 Navigating Physical and Emotional Stress and Noticing Where It Shows Up In Our Body As A Rare Disease Caregiver - With Christy Foster Joining me today is my sister, Christy Foster. We're talking …
Duración: 46 minWhere the Glimmers Can Surface
08 Ago, 2024ONCE UPON A GENE - EPISODE 238 Where the Glimmers Can Surface We were at our beloved park— the one we helped renovate to be inclusive and accessible, then made a trip to a nearby grocery store nearby. Ford loves …
Duración: 9 minJoin Us for The Global Genes Week In Rare
01 Ago, 2024ONCE UPON A GENE - EPISODE 237 Join Us for The Global Genes Week In Rare The 2024 Global Genes Week in RARE is happening in Kansas City, MO from September 25-28th. This is a powerhouse week packed with three …
Duración: 6 minRare Disease Research - Insights from Charles River Labs with Roxana Redis and David Fischer
25 Jul, 2024ONCE UPON A GENE - EPISODE 236 Rare Disease Research - Insights from Charles River Labs with Roxana Redis and David Fischer Charles River Labs is a rare disease research and drug development powerhouse and their work leads to life-changing …
Duración: 30 min
