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 - Family Camp, Annoying Brothers, and ...
4 min
227
Mental Health and living with chronic stress wi...
50 min
228
Discovering New Treatments for Rare Genetic Dis...
32 min
229
Effisode - Heatwaves and a Happy Birthday
5 min
230
Living with Persistent Uncertainty without a Ra...
34 min
231
A Rare Collection - Superheroes
18 min
232
Effisode - Making Cents of it All
6 min
233
Why a Diagnosis Matters with HNRNPH2 Rare Mom A...
36 min
234
Helping to Further the Patient Impact of Genomi...
30 min
235
Effisode - Putting the Play in Playground with ...
7 min
236
Relief and Inspiration for Mothers of Children ...
57 min
237
Advocates Come in Small Packages - My Life with...
20 min
238
Effisode - Unexpected Moments in the Stairwell
5 min
239
Rare Disease - The Ultimate Special Teams with ...
40 min
240
Rare Disease Adoption with Josh and Monica Poynter
27 min
241
Effisode - Empathy Puts Some Pep in Your Step
7 min
242
Rare Disease and Grief - Its Ok That You're Not...
62 min
243
Creating Space for Mental Health for Men Living...
27 min
244
Effisode - Adventures in the Grocery Store
ONCE UPON A GENE - EFFISODE
10 min
245
Media with a Mission with Believe Limited CEO P...
ONCE UPON A GENE - EPISODE 078
40 min
246
Top Tips on Advocating For Your Child with Momv...
ONCE UPON A GENE - Episode 077
23 min
247
Effisode - Nacho, Nacho Man
6 min
248
AllStripes - Jump Start New Research for Your R...
26 min
249
Rare Mom Madeline Cheney - The Rare Life Podcast
ONCE UPON A GENE - EPISODE 075
32 min
250
Effisode - An Advocate's Elevator Pitch
Intro music by Scott Holmes
5 min