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
WSU ROAR - Responsibility, Opportunities, Advoc...
ONCE UPON A GENE - EPISODE 042
30 min
302
Time is Brain - SynGap Research Fund with Mike ...
ONCE UPON A GENE - EPISODE 041
35 min
303
Bonus Episode - Usher Syndrome Type III with El...
54 min
304
Physical and Emotional Well-Being for the Careg...
ONCE UPON A GENE - EPISODE 040
46 min
305
Next Steps - A Journey Through CRPS to an Above...
ONCE UPON A GENE - EPISODE 039
34 min
306
Rare Like Us with Taylor Kane
ONCE UPON A GENE - EPISODE 038
37 min
307
Founder of LakiKid - Sensory Tools for Home and...
ONCE UPON A GENE - EPISODE 037
28 min
308
Anna Laurent on Alagille Syndrome and Her Road ...
ONCE UPON A GENE - EPISODE 036
38 min
309
Sage Graves - Estate Planning, Guardianship, Sp...
ONCE UPON A GENE - EPISODE 035
38 min
310
The Ladies Behind the Edits
ONCE UPON A GENE - EPISODE 034
34 min
311
Loving Large: A Mother's Rare Disease Memoir Wi...
41 min
312
In Loving Memory of Lucas DeFabio
4 min
313
Beyond Quarantine: Acceptance, Empathy, and a B...
35 min
314
Quarantine - What We're Missing, What We're Not...
31 min
315
Trust Your Instincts; An Early Intervention Can...
37 min
316
Put Your Own Oxygen Mask On First
30 min
317
Rare Disease Trailblazer and Co-Founder of Diso...
36 min
318
Therapy Check-In With Rose Reif
38 min
319
How Our Rare Kids Can Shape Us
34 min
320
A Grandfather's Story of Guardianship, Caregivi...
42 min
321
Choosing Hope
33 min
322
Mental Health and Coping During Covid-19
38 min
323
School Closures and FAPE
28 min
324
A Healthier Healthcare For All
40 min
325
Morgan's Wonderland
27 min