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 - Gilmore Girls, Pumpkin Spice, and Baja
3 min
152
A Groundbreaking Gene Therapy In Record Time to...
30 min
153
Improving Inclusion Practices in Schools with t...
37 min
154
Effisode - Shake It Off
6 min
155
A Rare Collection - Underestimated
18 min
156
Rare Friends Forever - Hanging Out and Showing ...
39 min
157
Effisode - Inclusion Revolution
2 min
158
Rare Disease Families Have Plenty of Hope - Wha...
38 min
159
Together We Can Cure Single-Gene Disorders Star...
42 min
160
Effisode - Montana or Bust
3 min
161
Rare Disease Siblings, The Glass House Children...
41 min
162
A Rare Collection - Easier Said Than Done
16 min
163
Effisode - The Lunchboxes
2 min
164
When Your Career and Personal Life Collide - VP...
34 min
165
Ensuring that the Patient and Caregiver Voice a...
29 min
166
Effisode - CTNNB1 Awareness Day - Rare Disease ...
3 min
167
Summer Surfing - Get On Top of the IEP Wave - T...
49 min
168
A Rare Collection - I Will Never Forget
16 min
169
Effisode - Back on Track - All Aboard the Inclu...
5 min
170
Half of the Day She's a Diversity Champion, the...
35 min
171
A Rare Mama Bear - Being a Single Parent and Ad...
27 min
172
Effisode - Global Genes RARE Disease Patient Ad...
5 min
173
Picking the Brain of a Rare Disease Dad - With ...
27 min
174
A Rare Collection - Remember Who You Are
24 min
175
Effisode - Find Your Fairy Godmother
5 min