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
26
Mastering the Art of the Supermarket Answer Whe...
28 min
27
From Heartbreak to Hope - With CEO of Parent Pr...
55 min
28
Effisode - The Irony of it All
4 min
29
These Two Rare Disease Parents Never Met Until ...
60 min
30
Utilizing Child Life Specialists - Empowering R...
32 min
31
A Rare Collection - Five Advocacy Aces Share Th...
39 min
32
Effisode - 2023 SynGAP Cannonball for a Cure
3 min
33
Fundraising Strategies for Patient Advocacy Org...
31 min
34
Navigating Parenthood as a Rare Mom - Expert In...
45 min
35
Effisode - The Unconventional Toothfairy
4 min
36
Advocating with Heart - Striking the Balance Be...
43 min
37
Rare Disease Dad Chronicles - From Stay-At-Home...
47 min
38
Effisode - Summer Camp for Medically Complex Kids
8 min
39
A Rare Collection - Schools Out for the Summer
20 min
40
Anecdotes From a Rare Disease Dad of an Adult S...
35 min
41
A Guide for Rare Disease Patient Advocacy Group...
38 min
42
Claudia Gonzaga Jauregui
49 min
43
From the Rare Disease Bunker to Many More Birth...
24 min
44
A Rare Collection - A Father's Day Special - Am...
17 min
45
SCN8A Rare Mom - The Inch Stone Project and DEE...
39 min
46
Developing Personalized Therapeutics for Ultra ...
37 min
47
How Being a Mom to Twins with a Rare and Undiag...
43 min
48
Effisode - Are We The Actors
5 min
49
A Rare Collection - Keep Digging
18 min
50
The Tréxō Robot and the Many Benefits of this T...
36 min