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
Neena Nizar and the Jansen's Foundation
37 min
327
Distressed Genes Aren't Just A Fashion Statement
41 min
328
The Value of Genetic Counselors
45 min
329
The Lucky Few
25 min
330
Films and Fatherhood
Daniel DeFabio on Menkes Disease and the Rare Disease Film Festival
38 min
331
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
332
Sibling Support
35 min
333
My Favorite Pair of Genes
9 min
334
Rollin' With Spina Bifida
40 min
335
My Pfeiffer Pfamily
33 min
336
The Fathers Network
45 min
337
Heartism
48 min
338
A Little Love
26 min
339
The Dadurday Chronicles
32 min
340
It's Your Party, and I'll Cry If I Want To
32 min
341
Telomere More About It
27 min
342
Hospital Hair Don't Care
26 min
343
Effie
13 min
344
Effie and Synthiea
21 min
345
Trailer
3 min