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
Effisode - Your Kids, My Kids - They're All Per...
5 min
227
Enabling Rare Disease Treatments with Sanath Ku...
28 min
228
A Rare Collection- Re-Runs with Patrick James L...
18 min
229
Effisode - Family Camp, Annoying Brothers, and ...
4 min
230
Mental Health and living with chronic stress wi...
50 min
231
Discovering New Treatments for Rare Genetic Dis...
32 min
232
Effisode - Heatwaves and a Happy Birthday
5 min
233
Living with Persistent Uncertainty without a Ra...
34 min
234
A Rare Collection - Superheroes
18 min
235
Effisode - Making Cents of it All
6 min
236
Why a Diagnosis Matters with HNRNPH2 Rare Mom A...
36 min
237
Helping to Further the Patient Impact of Genomi...
30 min
238
Effisode - Putting the Play in Playground with ...
7 min
239
Relief and Inspiration for Mothers of Children ...
57 min
240
Advocates Come in Small Packages - My Life with...
20 min
241
Effisode - Unexpected Moments in the Stairwell
5 min
242
Rare Disease - The Ultimate Special Teams with ...
40 min
243
Rare Disease Adoption with Josh and Monica Poynter
27 min
244
Effisode - Empathy Puts Some Pep in Your Step
7 min
245
Rare Disease and Grief - Its Ok That You're Not...
62 min
246
Creating Space for Mental Health for Men Living...
27 min
247
Effisode - Adventures in the Grocery Store
ONCE UPON A GENE - EFFISODE
10 min
248
Media with a Mission with Believe Limited CEO P...
ONCE UPON A GENE - EPISODE 078
40 min
249
Top Tips on Advocating For Your Child with Momv...
ONCE UPON A GENE - Episode 077
23 min
250
Effisode - Nacho, Nacho Man
6 min