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
276
A Grandfather's Story of Guardianship, Caregivi...
42 min
277
Choosing Hope
33 min
278
Mental Health and Coping During Covid-19
38 min
279
School Closures and FAPE
28 min
280
A Healthier Healthcare For All
40 min
281
Morgan's Wonderland
27 min
282
Neena Nizar and the Jansen's Foundation
37 min
283
Distressed Genes Aren't Just A Fashion Statement
41 min
284
The Value of Genetic Counselors
45 min
285
The Lucky Few
25 min
286
Films and Fatherhood
Daniel DeFabio on Menkes Disease and the Rare Disease Film Festival
38 min
287
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
288
Sibling Support
35 min
289
My Favorite Pair of Genes
9 min
290
Rollin' With Spina Bifida
40 min
291
My Pfeiffer Pfamily
33 min
292
The Fathers Network
45 min
293
Heartism
48 min
294
A Little Love
26 min
295
The Dadurday Chronicles
32 min
296
It's Your Party, and I'll Cry If I Want To
32 min
297
Telomere More About It
27 min
298
Hospital Hair Don't Care
26 min
299
Effie
13 min
300
Effie and Synthiea
21 min