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
A Groundbreaking Gene Therapy In Record Time to...
30 min
152
Improving Inclusion Practices in Schools with t...
37 min
153
Effisode - Shake It Off
6 min
154
A Rare Collection - Underestimated
18 min
155
Rare Friends Forever - Hanging Out and Showing ...
39 min
156
Effisode - Inclusion Revolution
2 min
157
Rare Disease Families Have Plenty of Hope - Wha...
38 min
158
Together We Can Cure Single-Gene Disorders Star...
42 min
159
Effisode - Montana or Bust
3 min
160
Rare Disease Siblings, The Glass House Children...
41 min
161
A Rare Collection - Easier Said Than Done
16 min
162
Effisode - The Lunchboxes
2 min
163
When Your Career and Personal Life Collide - VP...
34 min
164
Ensuring that the Patient and Caregiver Voice a...
29 min
165
Effisode - CTNNB1 Awareness Day - Rare Disease ...
3 min
166
Summer Surfing - Get On Top of the IEP Wave - T...
49 min
167
A Rare Collection - I Will Never Forget
16 min
168
Effisode - Back on Track - All Aboard the Inclu...
5 min
169
Half of the Day She's a Diversity Champion, the...
35 min
170
A Rare Mama Bear - Being a Single Parent and Ad...
27 min
171
Effisode - Global Genes RARE Disease Patient Ad...
5 min
172
Picking the Brain of a Rare Disease Dad - With ...
27 min
173
A Rare Collection - Remember Who You Are
24 min
174
Effisode - Find Your Fairy Godmother
5 min
175
Episode 138 - When Your Child is Facing the Mos...
36 min