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