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
Creating Space for Mental Health for Men Living...
27 min
252
Effisode - Adventures in the Grocery Store
ONCE UPON A GENE - EFFISODE
10 min
253
Media with a Mission with Believe Limited CEO P...
ONCE UPON A GENE - EPISODE 078
40 min
254
Top Tips on Advocating For Your Child with Momv...
ONCE UPON A GENE - Episode 077
23 min
255
Effisode - Nacho, Nacho Man
6 min
256
AllStripes - Jump Start New Research for Your R...
26 min
257
Rare Mom Madeline Cheney - The Rare Life Podcast
ONCE UPON A GENE - EPISODE 075
32 min
258
Effisode - An Advocate's Elevator Pitch
Intro music by Scott Holmes
5 min
259
Rare Disease Mom Chat with Mariah Gillaspie - L...
ONCE UPON A GENE - EPISODE 074
29 min
260
David Solomon - CEO of Pharnext - A Biopharmace...
ONCE UPON A GENE - EPISODE 073
20 min
261
Effisode - The Friendship Circle - Lilly and Ford
Intro music by Scott Holmes
5 min
262
The Importance of Early Intervention with Kinde...
ONCE UPON A GENE - EPISODE 072 The Importance of Early Intervention with Kindering CEO Lisa Greenwald Early intervention or birth to three are the vital services kids can receive in the beginning of their diagnosis journey. Dr. Lisa Greenwald is the...
27 min
263
Accelerating Clinical Research - Harsha Rajasim...
ONCE UPON A GENE - EPISODE 071
28 min
264
Effisode - Show Your Stripes With Us This Rare ...
Intro by Scott Holmes
5 min
265
Cure VCP With Rare Disease Trailblazer - Nathan...
ONCE UPON A GENE - EPISODE 070
28 min
266
Ben's Friends A Rare Disease Social and Support...
ONCE UPON A GENE - EPISODE 069
21 min
267
Effisode - A Child's Imagination
Intro music by Scott Holmes
4 min
268
Connecting the Dots From Patients to Researcher...
ONCE UPON A GENE - EPISODE 068
25 min
269
Hippotherapy and Adaptive Riding with Little Bi...
ONCE UPON A GENE - EPISODE 067
26 min
270
Effisode - Growth and Smash Cakes
Intro music by Scott Holmes
6 min
271
Rare Mama - Nikki McIntosh - Navigating Life wi...
ONCE UPON A GENE - EPISODE 066
25 min
272
Beginners Guide to Rare Disease - Anecdotes For...
ONCE UPON A GENE - EPISODE 065
45 min
273
Effisode - Never Underestimate the Determinatio...
Intro music by Scott Holmes
10 min
274
Seth Rotberg Founder of Our Odyssey and His Men...
ONCE UPON A GENE - EPISODE 064
37 min
275
The Life of an Angel Diagnosed with Blau Syndro...
ONCE UPON A GENE - EPISODE 063
52 min