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
A Family Plagued with Rare Genetic Disease, Adr...
ONCE UPON A GENE - EPISODE 046
27 min
302
Two Disabled Dudes - Kyle Bryant and Sean Baums...
ONCE UPON A GENE - EPISODE 045
36 min
303
Rare Together, Watch Together - Film Selections...
ONCE UPON A GENE - BONUS EPISODE
27 min
304
Effisode - Let Me Tell You About My Big Brother
4 min
305
A Mother's Crusade to Find a Cure for Her Son -...
ONCE UPON A GENE - EPISODE 044
42 min
306
David Fajgenbaum - Chasing My Cure - A Doctor's...
ONCE UPON A GENE - EPISODE 043
53 min
307
Effisode 001
7 min
308
WSU ROAR - Responsibility, Opportunities, Advoc...
ONCE UPON A GENE - EPISODE 042
30 min
309
Time is Brain - SynGap Research Fund with Mike ...
ONCE UPON A GENE - EPISODE 041
35 min
310
Bonus Episode - Usher Syndrome Type III with El...
54 min
311
Physical and Emotional Well-Being for the Careg...
ONCE UPON A GENE - EPISODE 040
46 min
312
Next Steps - A Journey Through CRPS to an Above...
ONCE UPON A GENE - EPISODE 039
34 min
313
Rare Like Us with Taylor Kane
ONCE UPON A GENE - EPISODE 038
37 min
314
Founder of LakiKid - Sensory Tools for Home and...
ONCE UPON A GENE - EPISODE 037
28 min
315
Anna Laurent on Alagille Syndrome and Her Road ...
ONCE UPON A GENE - EPISODE 036
38 min
316
Sage Graves - Estate Planning, Guardianship, Sp...
ONCE UPON A GENE - EPISODE 035
38 min
317
The Ladies Behind the Edits
ONCE UPON A GENE - EPISODE 034
34 min
318
Loving Large: A Mother's Rare Disease Memoir Wi...
41 min
319
In Loving Memory of Lucas DeFabio
4 min
320
Beyond Quarantine: Acceptance, Empathy, and a B...
35 min
321
Quarantine - What We're Missing, What We're Not...
31 min
322
Trust Your Instincts; An Early Intervention Can...
37 min
323
Put Your Own Oxygen Mask On First
30 min
324
Rare Disease Trailblazer and Co-Founder of Diso...
36 min
325
Therapy Check-In With Rose Reif
38 min