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
Summer Surfing - Get On Top of the IEP Wave - T...
49 min
152
A Rare Collection - I Will Never Forget
16 min
153
Effisode - Back on Track - All Aboard the Inclu...
5 min
154
Half of the Day She's a Diversity Champion, the...
35 min
155
A Rare Mama Bear - Being a Single Parent and Ad...
27 min
156
Effisode - Global Genes RARE Disease Patient Ad...
5 min
157
Picking the Brain of a Rare Disease Dad - With ...
27 min
158
A Rare Collection - Remember Who You Are
24 min
159
Effisode - Find Your Fairy Godmother
5 min
160
Episode 138 - When Your Child is Facing the Mos...
36 min
161
Advancing Therapies for Rare Liver Diseases and...
31 min
162
Effisode - Guilt - Ain't Nobody Got Time for That
3 min
163
The Value of Intensive Therapy for Kids with Di...
35 min
164
A Rare Collection - Up At Night
25 min
165
Effisode - RARE Entrepreneur Bootcamp Warriors
4 min
166
The Critical Role of Newborn Screening - Rare M...
37 min
167
Effisode - I Don't Like That
4 min
168
Rare Disease Caregiving Post Childhood with Rar...
40 min
169
Kelley Coleman - Author of You will Feel Better...
34 min
170
Effisode - Gimme a Break, Spring Break
4 min
171
A Rare Collection - Penny For Your Thoughts
18 min
172
Self Care for Your Healthcare with Ehlers Danlo...
36 min
173
Effisode - A Perfect Day for a Walk
5 min
174
Sisters’ Hope Foundation President and Founder ...
33 min
175
Building a Different Kind of Motherhood Experie...
40 min