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
251
A Family Plagued with Rare Genetic Disease, Adr...
ONCE UPON A GENE - EPISODE 046
27 min
252
Two Disabled Dudes - Kyle Bryant and Sean Baums...
ONCE UPON A GENE - EPISODE 045
36 min
253
Rare Together, Watch Together - Film Selections...
ONCE UPON A GENE - BONUS EPISODE
27 min
254
Effisode - Let Me Tell You About My Big Brother
4 min
255
A Mother's Crusade to Find a Cure for Her Son -...
ONCE UPON A GENE - EPISODE 044
42 min
256
David Fajgenbaum - Chasing My Cure - A Doctor's...
ONCE UPON A GENE - EPISODE 043
53 min
257
Effisode 001
7 min
258
WSU ROAR - Responsibility, Opportunities, Advoc...
ONCE UPON A GENE - EPISODE 042
30 min
259
Time is Brain - SynGap Research Fund with Mike ...
ONCE UPON A GENE - EPISODE 041
35 min
260
Bonus Episode - Usher Syndrome Type III with El...
54 min
261
Physical and Emotional Well-Being for the Careg...
ONCE UPON A GENE - EPISODE 040
46 min
262
Next Steps - A Journey Through CRPS to an Above...
ONCE UPON A GENE - EPISODE 039
34 min
263
Rare Like Us with Taylor Kane
ONCE UPON A GENE - EPISODE 038
37 min
264
Founder of LakiKid - Sensory Tools for Home and...
ONCE UPON A GENE - EPISODE 037
28 min
265
Anna Laurent on Alagille Syndrome and Her Road ...
ONCE UPON A GENE - EPISODE 036
38 min
266
Sage Graves - Estate Planning, Guardianship, Sp...
ONCE UPON A GENE - EPISODE 035
38 min
267
The Ladies Behind the Edits
ONCE UPON A GENE - EPISODE 034
34 min
268
Loving Large: A Mother's Rare Disease Memoir Wi...
41 min
269
In Loving Memory of Lucas DeFabio
4 min
270
Beyond Quarantine: Acceptance, Empathy, and a B...
35 min
271
Quarantine - What We're Missing, What We're Not...
31 min
272
Trust Your Instincts; An Early Intervention Can...
37 min
273
Put Your Own Oxygen Mask On First
30 min
274
Rare Disease Trailblazer and Co-Founder of Diso...
36 min
275
Therapy Check-In With Rose Reif
38 min