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
151
Effisode - Rare Disease Day
3 min
152
A Dads Fight to Survive Cancer and the Heavy Bu...
49 min
153
Create Conversation, Community, and Change with...
42 min
154
Effisode - The Kindness of Strangers
6 min
155
The Bravery of the Brokenhearted - A Big Brothe...
46 min
156
A Rare Collection - Lullabies
26 min
157
Effisode - The Magic of Friendship at the North...
6 min
158
Being Mindful of the Sibling Experience with Fo...
46 min
159
The Importance of Newborn Screening in Every St...
34 min
160
Effisode - Grief and Joy are Mingling this Holi...
7 min
161
Turkey Soup for the Soul and Stories About Rare...
44 min
162
A Rare Collection - Rare Disease Storytelling -...
13 min
163
Effisode - Find the Connection
5 min
164
Finding Hope From Diagnosis to Action - LMNA Re...
31 min
165
The Joy Doesn't Need to be Ambiguous Even Thoug...
40 min
166
Effisode - Cinderella, Cinderella
4 min
167
Rare Book Club with Co-Host Patti Hall - Featur...
44 min
168
Raising a Son with Batten Disease and the Impor...
40 min
169
Effisode - Two Disabled Dudes
40 min
170
A Rare Collection - Rare Disease Storytelling w...
21 min
171
How We Can Balance and Understand the Unique St...
41 min
172
Effisode - The Kids Do NAPA Center in Los Angeles
4 min
173
Strength - How We View It, Define It and Move T...
34 min
174
Finding Beauty and Connection When Raising a Me...
46 min
175
Effisode - Road Trip to NAPA Center
4 min