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
126
The Clinical Pharmacist - Why They Are A VIP Fo...
38 min
127
How Far We've Come - A Look at the FOXG1 Resear...
44 min
128
Effisode - Fire and Ice
9 min
129
Your Career and Personal Life Collide - Senior ...
38 min
130
A Rare Collection - Beep, Beep, Beep
21 min
131
Effisode - The List
7 min
132
A Mom's Advocacy For Her Son Who Has Hemophilia...
36 min
133
Social Security Disability Revealed - Why It's ...
52 min
134
Effisode - Chasing Greenlights
4 min
135
Medical Student - Urvi Gupta Joins the Global G...
22 min
136
The Effects of Rare Disease on Relationships an...
42 min
137
Effisode - Gravity
4 min
138
A Rare Collection - Batten Down the Hatches
15 min
139
CRELD1 Dadvocate Paying the Ultimate Price - Se...
49 min
140
Effisode - Gilmore Girls, Pumpkin Spice, and Baja
3 min
141
A Groundbreaking Gene Therapy In Record Time to...
30 min
142
Improving Inclusion Practices in Schools with t...
37 min
143
Effisode - Shake It Off
6 min
144
A Rare Collection - Underestimated
18 min
145
Rare Friends Forever - Hanging Out and Showing ...
39 min
146
Effisode - Inclusion Revolution
2 min
147
Rare Disease Families Have Plenty of Hope - Wha...
38 min
148
Together We Can Cure Single-Gene Disorders Star...
42 min
149
Effisode - Montana or Bust
3 min
150
Rare Disease Siblings, The Glass House Children...
41 min