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
26
Breaking the Silence: Growing Up with Sickle Ce...
33 min
27
Lighting the Way: A Story of Love, Friendship, ...
38 min
28
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
29
Transforming Pediatric Rare Disease Research: D...
39 min
30
Eight Years of Searching: A Determined Family’s...
31 min
31
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
32
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
33
Grateful Reflections for Epilepsy Awareness Mon...
156 min
34
Ready for Take Off: Mission for Accessible Air ...
37 min
35
The Unique Expertise of a Genetic Counselor - H...
40 min
36
Hospital Survival Kit - Advocating for Your Chi...
23 min
37
Real-World Self-Care for Caregivers - Tiny Wins...
17 min
38
Finding Strength in Friendship - Building In-Pe...
24 min
39
Beginners Guide to Rare Disease - Wisdom from O...
24 min
40
Chasing Glimmers - Electric Love Disability Ret...
32 min
41
Choosing Friends as a Rare Disease Parent - Bui...
16 min
42
Chasing Glimmers - Whats Glimmering with Katie ...
31 min
43
A Mother's Mission - Project Baby Lion, ASO The...
34 min
44
Navigating Physical and Emotional Stress and No...
46 min
45
Where the Glimmers Can Surface
9 min
46
Join Us for The Global Genes Week In Rare
6 min
47
Rare Disease Research - Insights from Charles R...
30 min
48
Rare Connections in NMOSD (Neuromyelitis Optics...
37 min
49
Chasing Glimmers - Illuminating Hope and Lesson...
44 min
50
Are You Worried About Your Baby's Development -...
8 min