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
201
A Rare Collection - Rare Disease Storytelling -...
13 min
202
Effisode - Find the Connection
5 min
203
Finding Hope From Diagnosis to Action - LMNA Re...
31 min
204
The Joy Doesn't Need to be Ambiguous Even Thoug...
40 min
205
Effisode - Cinderella, Cinderella
4 min
206
Rare Book Club with Co-Host Patti Hall - Featur...
44 min
207
Raising a Son with Batten Disease and the Impor...
40 min
208
Effisode - Two Disabled Dudes
40 min
209
A Rare Collection - Rare Disease Storytelling w...
21 min
210
How We Can Balance and Understand the Unique St...
41 min
211
Effisode - The Kids Do NAPA Center in Los Angeles
4 min
212
Strength - How We View It, Define It and Move T...
34 min
213
Finding Beauty and Connection When Raising a Me...
46 min
214
Effisode - Road Trip to NAPA Center
4 min
215
A Rare Collection - Rare Disease Storytelling w...
24 min
216
Strength and Inspiration Found Through Rare Dis...
33 min
217
Effisode - Ford Goes to Kindergarten
4 min
218
Five Common Errors Made by Recently Diagnosed, ...
42 min
219
A Mother's Story of Finding Your People, Accept...
33 min
220
Effisode - From the Sidelines
6 min
221
Finding Peace and New Energy to Dig Deeper Afte...
27 min
222
A Rare Collection - Rare Disease Storytelling -...
17 min
223
Effisode - Rare and Relatable - Rare Disease St...
4 min
224
The 12 Commandments to guide you when you're st...
48 min
225
Leading the World Gene Therapy Program for CTNN...
39 min