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
Genomics England Clinical Lead for Genetic Coun...
43 min
52
James G Robinson - More Than We Expected Author...
53 min
53
More of Everything - How I Became a Better Pare...
51 min
54
Uniting Science and Hope - COMBINEDBrain and it...
55 min
55
A Rare Collection - Five Advocacy Aces Share Th...
39 min
56
Soundtrack of Silence - Love, Loss, and a Playl...
43 min
57
Beyond the Crossroads- Rebuilding and Reclaimin...
34 min
58
A Courageous Gift - The Power of Brain and Tiss...
41 min
59
Finding Strength In Every Step
17 min
60
Pain Points on the Disorder Channel with Daniel...
11 min
61
The Juggle is Real - Navigating Parenthood and ...
49 min
62
GeneDX - A Genetic Diagnosis Matters with Gay G...
45 min
63
A Leap of Faith - Rare Disease Moms on the Bitt...
40 min
64
Turkey Soup for the Soul
6 min
65
Breaking Barriers in Brain Health with Tracy Di...
52 min
66
Policy as a Pathway - Advocating for Rare Disea...
44 min
67
Palliative Care & the Courageous Parent Network...
ONCE UPON A GENE - EPISODE 059
40 min
68
Figuring Out How to Infuse Meaning in the Days ...
42 min
69
Mastering the Art of the Supermarket Answer Whe...
28 min
70
From Heartbreak to Hope - With CEO of Parent Pr...
55 min
71
Effisode - The Irony of it All
4 min
72
These Two Rare Disease Parents Never Met Until ...
60 min
73
Utilizing Child Life Specialists - Empowering R...
32 min
74
A Rare Collection - Five Advocacy Aces Share Th...
39 min
75
Effisode - 2023 SynGAP Cannonball for a Cure
3 min