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
226
Connecting the Dots From Patients to Researcher...
ONCE UPON A GENE - EPISODE 068
25 min
227
Hippotherapy and Adaptive Riding with Little Bi...
ONCE UPON A GENE - EPISODE 067
26 min
228
Effisode - Growth and Smash Cakes
Intro music by Scott Holmes
6 min
229
Rare Mama - Nikki McIntosh - Navigating Life wi...
ONCE UPON A GENE - EPISODE 066
25 min
230
Beginners Guide to Rare Disease - Anecdotes For...
ONCE UPON A GENE - EPISODE 065
45 min
231
Effisode - Never Underestimate the Determinatio...
Intro music by Scott Holmes
10 min
232
Seth Rotberg Founder of Our Odyssey and His Men...
ONCE UPON A GENE - EPISODE 064
37 min
233
The Life of an Angel Diagnosed with Blau Syndro...
ONCE UPON A GENE - EPISODE 063
52 min
234
Effisode - The Magic of Christmas
Music provided by Scott Holmes
7 min
235
Cookies4Cures with Dana Perella
ONCE UPON A GENE - EPISODE 062
19 min
236
The Glass Child - Being a Sibling to My Rare Di...
ONCE UPON A GENE - EPISODE 061
53 min
237
Effisode - Family Dinner
Music provided by Scott Holmes
7 min
238
Pediatric Occupational Therapy with OT4Lyfe - S...
ONCE UPON A GENE - EPISODE 060
51 min
239
Effisode - Caregiver Personal Trainer Wanted
Intro music by Scott Holmes
7 min
240
Turkey Soup for the Soul
ONCE UPON A GENE - EPISODE 058
41 min
241
Effisode - Out with the Ick
Intro music by Scott Holmes
5 min
242
Effisode - Friendship, Inclusion, and Tough Con...
Intro music by Scott Holmes
8 min
243
Living With Chronic Pain - International Pain F...
ONCE UPON A GENE - EPISODE 053 Living with Chronic Pain - International Pain Foundation President Barby Ingle is a fierce advocate, the President of the , a chronic pain educator and advocate, motivational speaker, Amazon best-selling author and...
38 min
244
Effisode - Making Friends and Talking About Dif...
Music provided by Scott Holmes
6 min
245
Effisode - Merch, Napa Center, and Beach Advent...
Into music by Scott Holmes
6 min
246
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
247
Thanatophoric Skeletal Dysplasia with Ashequka ...
ONCE UPON A GENE - EPISODE 049
35 min
248
Fake It Til You Make It - Public Speaking, Road...
Intro music provided by Scott Holmes
4 min
249
What is Chronically Surviving with Marcelle Lon...
ONCE UPON A GENE - EPISODE 048
33 min
250
Ciitizen - Take Control of Your Own Medical Rec...
ONCE UPON A GENE - EPISODE 047
30 min