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
A Leap of Faith - Rare Disease Moms on the Bitt...
40 min
77
Turkey Soup for the Soul
6 min
78
Breaking Barriers in Brain Health with Tracy Di...
52 min
79
Policy as a Pathway - Advocating for Rare Disea...
44 min
80
Palliative Care & the Courageous Parent Network...
ONCE UPON A GENE - EPISODE 059
40 min
81
Figuring Out How to Infuse Meaning in the Days ...
42 min
82
Mastering the Art of the Supermarket Answer Whe...
28 min
83
From Heartbreak to Hope - With CEO of Parent Pr...
55 min
84
Effisode - The Irony of it All
4 min
85
These Two Rare Disease Parents Never Met Until ...
60 min
86
Utilizing Child Life Specialists - Empowering R...
32 min
87
A Rare Collection - Five Advocacy Aces Share Th...
39 min
88
Effisode - 2023 SynGAP Cannonball for a Cure
3 min
89
Fundraising Strategies for Patient Advocacy Org...
31 min
90
Navigating Parenthood as a Rare Mom - Expert In...
45 min
91
Effisode - The Unconventional Toothfairy
4 min
92
Advocating with Heart - Striking the Balance Be...
43 min
93
Rare Disease Dad Chronicles - From Stay-At-Home...
47 min
94
Effisode - Summer Camp for Medically Complex Kids
8 min
95
A Rare Collection - Schools Out for the Summer
20 min
96
Anecdotes From a Rare Disease Dad of an Adult S...
35 min
97
A Guide for Rare Disease Patient Advocacy Group...
38 min
98
Claudia Gonzaga Jauregui
49 min
99
From the Rare Disease Bunker to Many More Birth...
24 min
100
A Rare Collection - A Father's Day Special - Am...
17 min