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
301
Sage Graves - Estate Planning, Guardianship, Sp...
ONCE UPON A GENE - EPISODE 035
38 min
302
The Ladies Behind the Edits
ONCE UPON A GENE - EPISODE 034
34 min
303
Loving Large: A Mother's Rare Disease Memoir Wi...
41 min
304
In Loving Memory of Lucas DeFabio
4 min
305
Beyond Quarantine: Acceptance, Empathy, and a B...
35 min
306
Quarantine - What We're Missing, What We're Not...
31 min
307
Trust Your Instincts; An Early Intervention Can...
37 min
308
Put Your Own Oxygen Mask On First
30 min
309
Rare Disease Trailblazer and Co-Founder of Diso...
36 min
310
Therapy Check-In With Rose Reif
38 min
311
How Our Rare Kids Can Shape Us
34 min
312
A Grandfather's Story of Guardianship, Caregivi...
42 min
313
Choosing Hope
33 min
314
Mental Health and Coping During Covid-19
38 min
315
School Closures and FAPE
28 min
316
A Healthier Healthcare For All
40 min
317
Morgan's Wonderland
27 min
318
Neena Nizar and the Jansen's Foundation
37 min
319
Distressed Genes Aren't Just A Fashion Statement
41 min
320
The Value of Genetic Counselors
45 min
321
The Lucky Few
25 min
322
Films and Fatherhood
Daniel DeFabio on Menkes Disease and the Rare Disease Film Festival
38 min
323
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
324
Sibling Support
35 min
325
My Favorite Pair of Genes
9 min