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
76
Utilizing Child Life Specialists - Empowering R...
32 min
77
A Rare Collection - Five Advocacy Aces Share Th...
39 min
78
Effisode - 2023 SynGAP Cannonball for a Cure
3 min
79
Fundraising Strategies for Patient Advocacy Org...
31 min
80
Navigating Parenthood as a Rare Mom - Expert In...
45 min
81
Effisode - The Unconventional Toothfairy
4 min
82
Advocating with Heart - Striking the Balance Be...
43 min
83
Rare Disease Dad Chronicles - From Stay-At-Home...
47 min
84
Effisode - Summer Camp for Medically Complex Kids
8 min
85
A Rare Collection - Schools Out for the Summer
20 min
86
Anecdotes From a Rare Disease Dad of an Adult S...
35 min
87
A Guide for Rare Disease Patient Advocacy Group...
38 min
88
Claudia Gonzaga Jauregui
49 min
89
From the Rare Disease Bunker to Many More Birth...
24 min
90
A Rare Collection - A Father's Day Special - Am...
17 min
91
SCN8A Rare Mom - The Inch Stone Project and DEE...
39 min
92
Developing Personalized Therapeutics for Ultra ...
37 min
93
How Being a Mom to Twins with a Rare and Undiag...
43 min
94
Effisode - Are We The Actors
5 min
95
A Rare Collection - Keep Digging
18 min
96
The Tréxō Robot and the Many Benefits of this T...
36 min
97
The Outlet - How Chris Anselmo Used Writing to ...
39 min
98
A Rare Collection - Wishing Well
15 min
99
Effisode - The Ultimate Rare Disease Resource G...
4 min
100
Doctor and Rare Disease Dad Is On A Mission to ...
47 min