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
176
Effisode - Road Trip to NAPA Center
4 min
177
A Rare Collection - Rare Disease Storytelling w...
24 min
178
Strength and Inspiration Found Through Rare Dis...
33 min
179
Effisode - Ford Goes to Kindergarten
4 min
180
Five Common Errors Made by Recently Diagnosed, ...
42 min
181
A Mother's Story of Finding Your People, Accept...
33 min
182
Effisode - From the Sidelines
6 min
183
Finding Peace and New Energy to Dig Deeper Afte...
27 min
184
A Rare Collection - Rare Disease Storytelling -...
17 min
185
Effisode - Rare and Relatable - Rare Disease St...
4 min
186
The 12 Commandments to guide you when you're st...
48 min
187
Leading the World Gene Therapy Program for CTNN...
39 min
188
Effisode - Your Kids, My Kids - They're All Per...
5 min
189
Enabling Rare Disease Treatments with Sanath Ku...
28 min
190
A Rare Collection- Re-Runs with Patrick James L...
18 min
191
Effisode - Family Camp, Annoying Brothers, and ...
4 min
192
Mental Health and living with chronic stress wi...
50 min
193
Discovering New Treatments for Rare Genetic Dis...
32 min
194
Effisode - Heatwaves and a Happy Birthday
5 min
195
Living with Persistent Uncertainty without a Ra...
34 min
196
A Rare Collection - Superheroes
18 min
197
Effisode - Making Cents of it All
6 min
198
Why a Diagnosis Matters with HNRNPH2 Rare Mom A...
36 min
199
Helping to Further the Patient Impact of Genomi...
30 min
200
Effisode - Putting the Play in Playground with ...
7 min