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