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
Understanding Genetic Counseling - Essential In...
27 min
52
The Power of Genetic Diagnosis - More Than Just...
11 min
53
Balancing Rare Disease Advocacy and Family - Na...
36 min
54
Uniting Strengths - Rare Disease Collaboration ...
35 min
55
Episode 228 - Strength In Unity - The Power of ...
51 min
56
Bringing Balance Back to the Language of Disabi...
51 min
57
From Classrooms to Communities - Parents Vision...
45 min
58
The Bravery of the Brokenhearted - A Big Brothe...
46 min
59
The Complicated World of ICD10 Codes with CEO a...
Rare Diseases Need an ICD-10 code
28 min
60
Rare Epilepsy Network with Ilene Penn Miller an...
51 min
61
Krabbe Disease with Kasey Feldt
29 min
62
BeginNGS - Newborn Genomic Sequencing to End th...
38 min
63
A Rare Collection - From Financial Strain to Su...
17 min
64
Genomics England Clinical Lead for Genetic Coun...
43 min
65
James G Robinson - More Than We Expected Author...
53 min
66
More of Everything - How I Became a Better Pare...
51 min
67
Uniting Science and Hope - COMBINEDBrain and it...
55 min
68
A Rare Collection - Five Advocacy Aces Share Th...
39 min
69
Soundtrack of Silence - Love, Loss, and a Playl...
43 min
70
Beyond the Crossroads- Rebuilding and Reclaimin...
34 min
71
A Courageous Gift - The Power of Brain and Tiss...
41 min
72
Finding Strength In Every Step
17 min
73
Pain Points on the Disorder Channel with Daniel...
11 min
74
The Juggle is Real - Navigating Parenthood and ...
49 min
75
GeneDX - A Genetic Diagnosis Matters with Gay G...
45 min