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.

Society & Culture
Kids & Family
Parenting
51
Rare Epilepsy Network with Ilene Penn Miller an...
51 min
52
Krabbe Disease with Kasey Feldt
29 min
53
BeginNGS - Newborn Genomic Sequencing to End th...
38 min
54
A Rare Collection - From Financial Strain to Su...
17 min
55
Genomics England Clinical Lead for Genetic Coun...
43 min
56
James G Robinson - More Than We Expected Author...
53 min
57
More of Everything - How I Became a Better Pare...
51 min
58
Uniting Science and Hope - COMBINEDBrain and it...
55 min
59
A Rare Collection - Five Advocacy Aces Share Th...
39 min
60
Soundtrack of Silence - Love, Loss, and a Playl...
43 min
61
Beyond the Crossroads- Rebuilding and Reclaimin...
34 min
62
A Courageous Gift - The Power of Brain and Tiss...
41 min
63
Finding Strength In Every Step
17 min
64
Pain Points on the Disorder Channel with Daniel...
11 min
65
The Juggle is Real - Navigating Parenthood and ...
49 min
66
GeneDX - A Genetic Diagnosis Matters with Gay G...
45 min
67
A Leap of Faith - Rare Disease Moms on the Bitt...
40 min
68
Turkey Soup for the Soul
6 min
69
Breaking Barriers in Brain Health with Tracy Di...
52 min
70
Policy as a Pathway - Advocating for Rare Disea...
44 min
71
Palliative Care & the Courageous Parent Network...
ONCE UPON A GENE - EPISODE 059
40 min
72
Figuring Out How to Infuse Meaning in the Days ...
42 min
73
Mastering the Art of the Supermarket Answer Whe...
28 min
74
From Heartbreak to Hope - With CEO of Parent Pr...
55 min
75
Effisode - The Irony of it All
4 min