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
101
Helping Undiagnosed Patients Who Experience Sym...
42 min
102
Effisode - There's No Crying In Baseball
4 min
103
Patients and Caregivers Being Compensated to Te...
20 min
104
Take Part Founders and PYROXD-1 Parents - Matt ...
47 min
105
Effisode - Wheelchairs and Walls
4 min
106
A Rare Collection - Exhausted and Energized
12 min
107
Real Rare Mama Shop Talk - Deciding What We Sha...
38 min
108
Love, Hope and Cure SYNGAP
107 min
109
Every Patient Matters - Discovering, Developing...
39 min
110
Effisode - Rare Disease Day Events
4 min
111
A Rare Collection - To the Moon and Back
22 min
112
Honoring a Husbands Legacy by Finishing His Wor...
26 min
113
Effisode - Barbara Is Real
4 min
114
From Cancer Biologist to Rare Disease Mom - Dig...
28 min
115
Never Give Up - Two Decades of Struggles From D...
53 min
116
Effisode - Seizures Are Stupid
5 min
117
A Rare Collection - New Beginnings
17 min
118
Happiness Is Meant to Be Shared with Author, St...
57 min
119
Effisode - The Friendship Circle
5 min
120
Being Brave, Curious and Motivated to Help Make...
30 min
121
Care Team Prescription - The Importance of Clin...
28 min
122
Effisode - Rare Disease Day 2023
2 min
123
A Focus On Patient Advocacy - Participation In ...
36 min
124
A Rare Collection - Holiday Cheer
18 min
125
Effisode - Presents, Portraits and Beyond the D...
3 min