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