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
Never Give Up - Two Decades of Struggles From D...
53 min
127
Effisode - Seizures Are Stupid
5 min
128
A Rare Collection - New Beginnings
17 min
129
Happiness Is Meant to Be Shared with Author, St...
57 min
130
Effisode - The Friendship Circle
5 min
131
Being Brave, Curious and Motivated to Help Make...
30 min
132
Care Team Prescription - The Importance of Clin...
28 min
133
Effisode - Rare Disease Day 2023
2 min
134
A Focus On Patient Advocacy - Participation In ...
36 min
135
A Rare Collection - Holiday Cheer
18 min
136
Effisode - Presents, Portraits and Beyond the D...
3 min
137
The Clinical Pharmacist - Why They Are A VIP Fo...
38 min
138
How Far We've Come - A Look at the FOXG1 Resear...
44 min
139
Effisode - Fire and Ice
9 min
140
Your Career and Personal Life Collide - Senior ...
38 min
141
A Rare Collection - Beep, Beep, Beep
21 min
142
Effisode - The List
7 min
143
A Mom's Advocacy For Her Son Who Has Hemophilia...
36 min
144
Social Security Disability Revealed - Why It's ...
52 min
145
Effisode - Chasing Greenlights
4 min
146
Medical Student - Urvi Gupta Joins the Global G...
22 min
147
The Effects of Rare Disease on Relationships an...
42 min
148
Effisode - Gravity
4 min
149
A Rare Collection - Batten Down the Hatches
15 min
150
CRELD1 Dadvocate Paying the Ultimate Price - Se...
49 min