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
Adam Johnson - Rare Disease Dad on Mitochondria...
ONCE UPON A GENE - EPISODE 052 Adam Johnson - Rare Disease Dad on Mitochondrial Myopathy and Owning Your Story Adam “DadVocate” Johnson is a dad, diagnosed with Mitochondrial Myopathy. He blogs about his rare disease story, grief and experience on...
42 min
302
Truncus Arteriosus - A Rare Form of Congenital ...
ONCE UPON A GENE - EPISODE 051 Truncus Arteriosus - A Rare Form of Congenital Heart Disease with Sonja Voice Charlotte was born with a rare form of congenital heart disease called Truncus Arteriosus. After Charlotte was born, her mom, Sonja Voice,...
37 min
303
Effisode - Merch, Napa Center, and Beach Advent...
Into music by Scott Holmes
6 min
304
Reflecting on 50 Episodes with Effie and Casey
ONCE UPON A GENE - EPISODE 050 Reflecting on 50 Episodes with Effie and Casey It's the 50th episode of the Once Upon a Gene podcast and Casey and Effie reflect on their journey, past guests, experiences and the stories that have touched them. EPISODE...
18 min
305
Thanatophoric Skeletal Dysplasia with Ashequka ...
ONCE UPON A GENE - EPISODE 049
35 min
306
Fake It Til You Make It - Public Speaking, Road...
Intro music provided by Scott Holmes
4 min
307
What is Chronically Surviving with Marcelle Lon...
ONCE UPON A GENE - EPISODE 048
33 min
308
Ciitizen - Take Control of Your Own Medical Rec...
ONCE UPON A GENE - EPISODE 047
30 min
309
School Busses, Road Trips and Friendship
Intro music provided by Scott Holmes
4 min
310
A Family Plagued with Rare Genetic Disease, Adr...
ONCE UPON A GENE - EPISODE 046
27 min
311
Two Disabled Dudes - Kyle Bryant and Sean Baums...
ONCE UPON A GENE - EPISODE 045
36 min
312
Rare Together, Watch Together - Film Selections...
ONCE UPON A GENE - BONUS EPISODE
27 min
313
Effisode - Let Me Tell You About My Big Brother
4 min
314
A Mother's Crusade to Find a Cure for Her Son -...
ONCE UPON A GENE - EPISODE 044
42 min
315
David Fajgenbaum - Chasing My Cure - A Doctor's...
ONCE UPON A GENE - EPISODE 043
53 min
316
Effisode 001
7 min
317
WSU ROAR - Responsibility, Opportunities, Advoc...
ONCE UPON A GENE - EPISODE 042
30 min
318
Time is Brain - SynGap Research Fund with Mike ...
ONCE UPON A GENE - EPISODE 041
35 min
319
Bonus Episode - Usher Syndrome Type III with El...
54 min
320
Physical and Emotional Well-Being for the Careg...
ONCE UPON A GENE - EPISODE 040
46 min
321
Next Steps - A Journey Through CRPS to an Above...
ONCE UPON A GENE - EPISODE 039
34 min
322
Rare Like Us with Taylor Kane
ONCE UPON A GENE - EPISODE 038
37 min
323
Founder of LakiKid - Sensory Tools for Home and...
ONCE UPON A GENE - EPISODE 037
28 min
324
Anna Laurent on Alagille Syndrome and Her Road ...
ONCE UPON A GENE - EPISODE 036
38 min
325
Sage Graves - Estate Planning, Guardianship, Sp...
ONCE UPON A GENE - EPISODE 035
38 min