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
Effisode - Seizures Are Stupid
5 min
127
A Rare Collection - New Beginnings
17 min
128
Happiness Is Meant to Be Shared with Author, St...
57 min
129
Effisode - The Friendship Circle
5 min
130
Being Brave, Curious and Motivated to Help Make...
30 min
131
Care Team Prescription - The Importance of Clin...
28 min
132
Effisode - Rare Disease Day 2023
2 min
133
A Focus On Patient Advocacy - Participation In ...
36 min
134
A Rare Collection - Holiday Cheer
18 min
135
Effisode - Presents, Portraits and Beyond the D...
3 min
136
The Clinical Pharmacist - Why They Are A VIP Fo...
38 min
137
How Far We've Come - A Look at the FOXG1 Resear...
44 min
138
Effisode - Fire and Ice
9 min
139
Your Career and Personal Life Collide - Senior ...
38 min
140
A Rare Collection - Beep, Beep, Beep
21 min
141
Effisode - The List
7 min
142
A Mom's Advocacy For Her Son Who Has Hemophilia...
36 min
143
Social Security Disability Revealed - Why It's ...
52 min
144
Effisode - Chasing Greenlights
4 min
145
Medical Student - Urvi Gupta Joins the Global G...
22 min
146
The Effects of Rare Disease on Relationships an...
42 min
147
Effisode - Gravity
4 min
148
A Rare Collection - Batten Down the Hatches
15 min
149
CRELD1 Dadvocate Paying the Ultimate Price - Se...
49 min
150
Effisode - Gilmore Girls, Pumpkin Spice, and Baja
3 min