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
201
Relief and Inspiration for Mothers of Children ...
57 min
202
Advocates Come in Small Packages - My Life with...
20 min
203
Effisode - Unexpected Moments in the Stairwell
5 min
204
Rare Disease - The Ultimate Special Teams with ...
40 min
205
Rare Disease Adoption with Josh and Monica Poynter
27 min
206
Effisode - Empathy Puts Some Pep in Your Step
7 min
207
Rare Disease and Grief - Its Ok That You're Not...
62 min
208
Creating Space for Mental Health for Men Living...
27 min
209
Effisode - Adventures in the Grocery Store
ONCE UPON A GENE - EFFISODE
10 min
210
Media with a Mission with Believe Limited CEO P...
ONCE UPON A GENE - EPISODE 078
40 min
211
Top Tips on Advocating For Your Child with Momv...
ONCE UPON A GENE - Episode 077
23 min
212
Effisode - Nacho, Nacho Man
6 min
213
AllStripes - Jump Start New Research for Your R...
26 min
214
Rare Mom Madeline Cheney - The Rare Life Podcast
ONCE UPON A GENE - EPISODE 075
32 min
215
Effisode - An Advocate's Elevator Pitch
Intro music by Scott Holmes
5 min
216
Rare Disease Mom Chat with Mariah Gillaspie - L...
ONCE UPON A GENE - EPISODE 074
29 min
217
David Solomon - CEO of Pharnext - A Biopharmace...
ONCE UPON A GENE - EPISODE 073
20 min
218
Effisode - The Friendship Circle - Lilly and Ford
Intro music by Scott Holmes
5 min
219
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
220
Accelerating Clinical Research - Harsha Rajasim...
ONCE UPON A GENE - EPISODE 071
28 min
221
Effisode - Show Your Stripes With Us This Rare ...
Intro by Scott Holmes
5 min
222
Cure VCP With Rare Disease Trailblazer - Nathan...
ONCE UPON A GENE - EPISODE 070
28 min
223
Ben's Friends A Rare Disease Social and Support...
ONCE UPON A GENE - EPISODE 069
21 min
224
Effisode - A Child's Imagination
Intro music by Scott Holmes
4 min
225
Connecting the Dots From Patients to Researcher...
ONCE UPON A GENE - EPISODE 068
25 min