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
AllStripes - Jump Start New Research for Your R...
26 min
252
Rare Mom Madeline Cheney - The Rare Life Podcast
ONCE UPON A GENE - EPISODE 075
32 min
253
Effisode - An Advocate's Elevator Pitch
Intro music by Scott Holmes
5 min
254
Rare Disease Mom Chat with Mariah Gillaspie - L...
ONCE UPON A GENE - EPISODE 074
29 min
255
David Solomon - CEO of Pharnext - A Biopharmace...
ONCE UPON A GENE - EPISODE 073
20 min
256
Effisode - The Friendship Circle - Lilly and Ford
Intro music by Scott Holmes
5 min
257
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
258
Accelerating Clinical Research - Harsha Rajasim...
ONCE UPON A GENE - EPISODE 071
28 min
259
Effisode - Show Your Stripes With Us This Rare ...
Intro by Scott Holmes
5 min
260
Cure VCP With Rare Disease Trailblazer - Nathan...
ONCE UPON A GENE - EPISODE 070
28 min
261
Ben's Friends A Rare Disease Social and Support...
ONCE UPON A GENE - EPISODE 069
21 min
262
Effisode - A Child's Imagination
Intro music by Scott Holmes
4 min
263
Connecting the Dots From Patients to Researcher...
ONCE UPON A GENE - EPISODE 068
25 min
264
Hippotherapy and Adaptive Riding with Little Bi...
ONCE UPON A GENE - EPISODE 067
26 min
265
Effisode - Growth and Smash Cakes
Intro music by Scott Holmes
6 min
266
Rare Mama - Nikki McIntosh - Navigating Life wi...
ONCE UPON A GENE - EPISODE 066
25 min
267
Beginners Guide to Rare Disease - Anecdotes For...
ONCE UPON A GENE - EPISODE 065
45 min
268
Effisode - Never Underestimate the Determinatio...
Intro music by Scott Holmes
10 min
269
Seth Rotberg Founder of Our Odyssey and His Men...
ONCE UPON A GENE - EPISODE 064
37 min
270
The Life of an Angel Diagnosed with Blau Syndro...
ONCE UPON A GENE - EPISODE 063
52 min
271
Effisode - The Magic of Christmas
Music provided by Scott Holmes
7 min
272
Cookies4Cures with Dana Perella
ONCE UPON A GENE - EPISODE 062
19 min
273
The Glass Child - Being a Sibling to My Rare Di...
ONCE UPON A GENE - EPISODE 061
53 min
274
Effisode - Family Dinner
Music provided by Scott Holmes
7 min
275
Pediatric Occupational Therapy with OT4Lyfe - S...
ONCE UPON A GENE - EPISODE 060
51 min