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
Rare Like Us with Taylor Kane
ONCE UPON A GENE - EPISODE 038
37 min
302
Founder of LakiKid - Sensory Tools for Home and...
ONCE UPON A GENE - EPISODE 037
28 min
303
Anna Laurent on Alagille Syndrome and Her Road ...
ONCE UPON A GENE - EPISODE 036
38 min
304
Sage Graves - Estate Planning, Guardianship, Sp...
ONCE UPON A GENE - EPISODE 035
38 min
305
The Ladies Behind the Edits
ONCE UPON A GENE - EPISODE 034
34 min
306
Loving Large: A Mother's Rare Disease Memoir Wi...
41 min
307
In Loving Memory of Lucas DeFabio
4 min
308
Beyond Quarantine: Acceptance, Empathy, and a B...
35 min
309
Quarantine - What We're Missing, What We're Not...
31 min
310
Trust Your Instincts; An Early Intervention Can...
37 min
311
Put Your Own Oxygen Mask On First
30 min
312
Rare Disease Trailblazer and Co-Founder of Diso...
36 min
313
Therapy Check-In With Rose Reif
38 min
314
How Our Rare Kids Can Shape Us
34 min
315
A Grandfather's Story of Guardianship, Caregivi...
42 min
316
Choosing Hope
33 min
317
Mental Health and Coping During Covid-19
38 min
318
School Closures and FAPE
28 min
319
A Healthier Healthcare For All
40 min
320
Morgan's Wonderland
27 min
321
Neena Nizar and the Jansen's Foundation
37 min
322
Distressed Genes Aren't Just A Fashion Statement
41 min
323
The Value of Genetic Counselors
45 min
324
The Lucky Few
25 min
325
Films and Fatherhood
Daniel DeFabio on Menkes Disease and the Rare Disease Film Festival
38 min