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
1
A Leap of Faith - Rare Disease Moms on the Bitt...
40 min
2
Turkey Soup for the Soul
6 min
3
Breaking Barriers in Brain Health with Tracy Di...
52 min
4
Policy as a Pathway - Advocating for Rare Disea...
44 min
5
Palliative Care & the Courageous Parent Network...
ONCE UPON A GENE - EPISODE 059
40 min
6
Figuring Out How to Infuse Meaning in the Days ...
42 min
7
Mastering the Art of the Supermarket Answer Whe...
28 min
8
From Heartbreak to Hope - With CEO of Parent Pr...
55 min
9
Effisode - The Irony of it All
4 min
10
These Two Rare Disease Parents Never Met Until ...
60 min
11
Utilizing Child Life Specialists - Empowering R...
32 min
12
A Rare Collection - Five Advocacy Aces Share Th...
39 min
13
Effisode - 2023 SynGAP Cannonball for a Cure
3 min
14
Fundraising Strategies for Patient Advocacy Org...
31 min
15
Navigating Parenthood as a Rare Mom - Expert In...
45 min
16
Effisode - The Unconventional Toothfairy
4 min
17
Advocating with Heart - Striking the Balance Be...
43 min
18
Rare Disease Dad Chronicles - From Stay-At-Home...
47 min
19
Effisode - Summer Camp for Medically Complex Kids
8 min
20
A Rare Collection - Schools Out for the Summer
20 min
21
Anecdotes From a Rare Disease Dad of an Adult S...
35 min
22
A Guide for Rare Disease Patient Advocacy Group...
38 min
23
Claudia Gonzaga Jauregui
49 min
24
From the Rare Disease Bunker to Many More Birth...
24 min
25
A Rare Collection - A Father's Day Special - Am...
17 min