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
1
Bringing Balance Back to the Language of Disabi...
51 min
2
From Classrooms to Communities - Parents Vision...
45 min
3
The Bravery of the Brokenhearted - A Big Brothe...
46 min
4
The Complicated World of ICD10 Codes with CEO a...
Rare Diseases Need an ICD-10 code
28 min
5
Rare Epilepsy Network with Ilene Penn Miller an...
51 min
6
Krabbe Disease with Kasey Feldt
29 min
7
BeginNGS - Newborn Genomic Sequencing to End th...
38 min
8
A Rare Collection - From Financial Strain to Su...
17 min
9
Genomics England Clinical Lead for Genetic Coun...
43 min
10
James G Robinson - More Than We Expected Author...
53 min
11
More of Everything - How I Became a Better Pare...
51 min
12
Uniting Science and Hope - COMBINEDBrain and it...
55 min
13
A Rare Collection - Five Advocacy Aces Share Th...
39 min
14
Soundtrack of Silence - Love, Loss, and a Playl...
43 min
15
Beyond the Crossroads- Rebuilding and Reclaimin...
34 min
16
A Courageous Gift - The Power of Brain and Tiss...
41 min
17
Finding Strength In Every Step
17 min
18
Pain Points on the Disorder Channel with Daniel...
11 min
19
The Juggle is Real - Navigating Parenthood and ...
49 min
20
GeneDX - A Genetic Diagnosis Matters with Gay G...
45 min
21
A Leap of Faith - Rare Disease Moms on the Bitt...
40 min
22
Turkey Soup for the Soul
6 min
23
Breaking Barriers in Brain Health with Tracy Di...
52 min
24
Policy as a Pathway - Advocating for Rare Disea...
44 min
25
Palliative Care & the Courageous Parent Network...
ONCE UPON A GENE - EPISODE 059
40 min