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