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 Rare Collection - Rare Disease Storytelling w...
24 min
2
Finding Joy in the Journey: A Guide for Parents...
42 min
3
From Beast Games Champ to Rare Disease Warrior:...
33 min
4
GeneDx Launches Cerebral Palsy Genetic Testing ...
32 min
5
Empowered Kids - Painless Labs :O'Ryan Health’s...
34 min
6
Navigating the Complexities of Grief: How One M...
53 min
7
Reimagining Pediatric Healthcare: How Imagine P...
Helping children with special health care needs get the care they need and deserve.
44 min
8
How a Service Dog Helped a Child with CACNA1C-R...
32 min
9
Unlocking Rare Disease Diagnoses with PacBio’s ...
33 min
10
Prioritizing Caregiver Health: Gut Health, Stre...
45 min
11
Breaking the Silence: Growing Up with Sickle Ce...
33 min
12
Lighting the Way: A Story of Love, Friendship, ...
38 min
13
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
14
Transforming Pediatric Rare Disease Research: D...
39 min
15
Eight Years of Searching: A Determined Family’s...
31 min
16
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
17
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
18
Grateful Reflections for Epilepsy Awareness Mon...
156 min
19
Ready for Take Off: Mission for Accessible Air ...
37 min
20
The Unique Expertise of a Genetic Counselor - H...
40 min
21
Hospital Survival Kit - Advocating for Your Chi...
23 min
22
Real-World Self-Care for Caregivers - Tiny Wins...
17 min
23
Finding Strength in Friendship - Building In-Pe...
24 min
24
Beginners Guide to Rare Disease - Wisdom from O...
24 min
25
Chasing Glimmers - Electric Love Disability Ret...
32 min