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
326
How Our Rare Kids Can Shape Us
34 min
327
A Grandfather's Story of Guardianship, Caregivi...
42 min
328
Choosing Hope
33 min
329
Mental Health and Coping During Covid-19
38 min
330
School Closures and FAPE
28 min
331
A Healthier Healthcare For All
40 min
332
Morgan's Wonderland
27 min
333
Neena Nizar and the Jansen's Foundation
37 min
334
Distressed Genes Aren't Just A Fashion Statement
41 min
335
The Value of Genetic Counselors
45 min
336
The Lucky Few
25 min
337
Films and Fatherhood
Daniel DeFabio on Menkes Disease and the Rare Disease Film Festival
38 min
338
A Fellow CTNNB1 Mama
ONCE UPON A GENE - EPISODE 014 A Fellow CTNNB1 Mama Tara Bryant is a special warrior mom who has a young son with CTNNB1 and she's sharing her heartfelt story with us. I connect with her as a mom, going through the same things with CTNNB1, we're both...
24 min
339
Sibling Support
35 min
340
My Favorite Pair of Genes
9 min
341
Rollin' With Spina Bifida
40 min
342
My Pfeiffer Pfamily
33 min
343
The Fathers Network
45 min
344
Heartism
48 min
345
A Little Love
26 min
346
The Dadurday Chronicles
32 min
347
It's Your Party, and I'll Cry If I Want To
32 min
348
Telomere More About It
27 min
349
Hospital Hair Don't Care
26 min
350
Effie
13 min