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
ONCE UPON A GENE- EPISODE #280: Comparing Our K...
22 min
2
ONCE UPON A GENE- EPISODE 279: Falling Into Pla...
33 min
3
ONCE UPON A GENE –EPISODE 278: His Son Was Diag...
36 min
4
ONCE UPON A GENE – EPISODE 277: A Mother’s Son ...
41 min
5
ONCE UPON A GENE – EPISODE 276: His Two Sons We...
41 min
6
ONCE UPON A GENE – EPISODE 275: How AI is Makin...
44 min
7
ONCE UPON A GENE – EPISODE 274: Caregiver Arche...
61 min
8
ONCE UPON A GENE - EPISODE 273 Caregiver Archet...
62 min
9
ONCE UPON A GENE - EPISODE 272 Caregiver Archet...
45 min
10
Caregiver Archetypes for Survival (Part 1) The ...
55 min
11
From Hopeless Grief to Heavenly Hope: Brittni L...
30 min
12
Smarter Speech: How Q-Voice Is Changing AAC for...
42 min
13
Why Genetic Testing Matters: The Case for Genet...
46 min
14
Mini Brains in a Dish: Organoids and the Future...
38 min
15
Healing in the Mess: Storytelling, Friendship &...
53 min
16
15 Years of Simons Searchlight: Dr. Wendy Chung...
23 min
17
A Rare Collection - Rare Disease Storytelling w...
24 min
18
Finding Joy in the Journey: A Guide for Parents...
42 min
19
From Beast Games Champ to Rare Disease Warrior:...
33 min
20
GeneDx Launches Cerebral Palsy Genetic Testing ...
32 min
21
Empowered Kids - Painless Labs :O'Ryan Health’s...
34 min
22
Navigating the Complexities of Grief: How One M...
53 min
23
Reimagining Pediatric Healthcare: How Imagine P...
Helping children with special health care needs get the care they need and deserve.
44 min
24
How a Service Dog Helped a Child with CACNA1C-R...
32 min
25
Unlocking Rare Disease Diagnoses with PacBio’s ...
33 min