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
Krabbe Disease with Kasey Feldt
29 min
52
BeginNGS - Newborn Genomic Sequencing to End th...
38 min
53
A Rare Collection - From Financial Strain to Su...
17 min
54
Genomics England Clinical Lead for Genetic Coun...
43 min
55
James G Robinson - More Than We Expected Author...
53 min
56
More of Everything - How I Became a Better Pare...
51 min
57
Uniting Science and Hope - COMBINEDBrain and it...
55 min
58
A Rare Collection - Five Advocacy Aces Share Th...
39 min
59
Soundtrack of Silence - Love, Loss, and a Playl...
43 min
60
Beyond the Crossroads- Rebuilding and Reclaimin...
34 min
61
A Courageous Gift - The Power of Brain and Tiss...
41 min
62
Finding Strength In Every Step
17 min
63
Pain Points on the Disorder Channel with Daniel...
11 min
64
The Juggle is Real - Navigating Parenthood and ...
49 min
65
GeneDX - A Genetic Diagnosis Matters with Gay G...
45 min
66
A Leap of Faith - Rare Disease Moms on the Bitt...
40 min
67
Turkey Soup for the Soul
6 min
68
Breaking Barriers in Brain Health with Tracy Di...
52 min
69
Policy as a Pathway - Advocating for Rare Disea...
44 min
70
Palliative Care & the Courageous Parent Network...
ONCE UPON A GENE - EPISODE 059
40 min
71
Figuring Out How to Infuse Meaning in the Days ...
42 min
72
Mastering the Art of the Supermarket Answer Whe...
28 min
73
From Heartbreak to Hope - With CEO of Parent Pr...
55 min
74
Effisode - The Irony of it All
4 min
75
These Two Rare Disease Parents Never Met Until ...
60 min