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