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
Smarter Speech: How Q-Voice Is Changing AAC for...
42 min
2
Why Genetic Testing Matters: The Case for Genet...
46 min
3
Mini Brains in a Dish: Organoids and the Future...
38 min
4
Healing in the Mess: Storytelling, Friendship &...
53 min
5
15 Years of Simons Searchlight: Dr. Wendy Chung...
23 min
6
A Rare Collection - Rare Disease Storytelling w...
24 min
7
Finding Joy in the Journey: A Guide for Parents...
42 min
8
From Beast Games Champ to Rare Disease Warrior:...
33 min
9
GeneDx Launches Cerebral Palsy Genetic Testing ...
32 min
10
Empowered Kids - Painless Labs :O'Ryan Health’s...
34 min
11
Navigating the Complexities of Grief: How One M...
53 min
12
Reimagining Pediatric Healthcare: How Imagine P...
Helping children with special health care needs get the care they need and deserve.
44 min
13
How a Service Dog Helped a Child with CACNA1C-R...
32 min
14
Unlocking Rare Disease Diagnoses with PacBio’s ...
33 min
15
Prioritizing Caregiver Health: Gut Health, Stre...
45 min
16
Breaking the Silence: Growing Up with Sickle Ce...
33 min
17
Lighting the Way: A Story of Love, Friendship, ...
38 min
18
Preconception & Prenatal Genetic Testing 101: A...
Natalie emphasizes that knowledge truly is power when it comes to family planning and navigating the complexities of genetic information.
42 min
19
Transforming Pediatric Rare Disease Research: D...
39 min
20
Eight Years of Searching: A Determined Family’s...
31 min
21
Chasing Glimmers - From Grief to Glitter: Paren...
Megan opens up about living with grief, disability, parenting challenges, fashion passions, crafting pursuits, and her love of nature—without confining herself to a single niche.
36 min
22
The Gift of Grace: A Holiday Heart-to-Heart f...
The Gift of Grace: A Holiday Heart-to-Heart for Caregivers - Episode 250
10 min
23
Grateful Reflections for Epilepsy Awareness Mon...
156 min
24
Ready for Take Off: Mission for Accessible Air ...
37 min
25
The Unique Expertise of a Genetic Counselor - H...
40 min