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
226
How We Can Balance and Understand the Unique St...
41 min
227
Effisode - The Kids Do NAPA Center in Los Angeles
4 min
228
Strength - How We View It, Define It and Move T...
34 min
229
Finding Beauty and Connection When Raising a Me...
46 min
230
Effisode - Road Trip to NAPA Center
4 min
231
A Rare Collection - Rare Disease Storytelling w...
24 min
232
Strength and Inspiration Found Through Rare Dis...
33 min
233
Effisode - Ford Goes to Kindergarten
4 min
234
Five Common Errors Made by Recently Diagnosed, ...
42 min
235
A Mother's Story of Finding Your People, Accept...
33 min
236
Effisode - From the Sidelines
6 min
237
Finding Peace and New Energy to Dig Deeper Afte...
27 min
238
A Rare Collection - Rare Disease Storytelling -...
17 min
239
Effisode - Rare and Relatable - Rare Disease St...
4 min
240
The 12 Commandments to guide you when you're st...
48 min
241
Leading the World Gene Therapy Program for CTNN...
39 min
242
Effisode - Your Kids, My Kids - They're All Per...
5 min
243
Enabling Rare Disease Treatments with Sanath Ku...
28 min
244
A Rare Collection- Re-Runs with Patrick James L...
18 min
245
Effisode - Family Camp, Annoying Brothers, and ...
4 min
246
Mental Health and living with chronic stress wi...
50 min
247
Discovering New Treatments for Rare Genetic Dis...
32 min
248
Effisode - Heatwaves and a Happy Birthday
5 min
249
Living with Persistent Uncertainty without a Ra...
34 min
250
A Rare Collection - Superheroes
18 min