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
Finding Peace and New Energy to Dig Deeper Afte...
27 min
227
A Rare Collection - Rare Disease Storytelling -...
17 min
228
Effisode - Rare and Relatable - Rare Disease St...
4 min
229
The 12 Commandments to guide you when you're st...
48 min
230
Leading the World Gene Therapy Program for CTNN...
39 min
231
Effisode - Your Kids, My Kids - They're All Per...
5 min
232
Enabling Rare Disease Treatments with Sanath Ku...
28 min
233
A Rare Collection- Re-Runs with Patrick James L...
18 min
234
Effisode - Family Camp, Annoying Brothers, and ...
4 min
235
Mental Health and living with chronic stress wi...
50 min
236
Discovering New Treatments for Rare Genetic Dis...
32 min
237
Effisode - Heatwaves and a Happy Birthday
5 min
238
Living with Persistent Uncertainty without a Ra...
34 min
239
A Rare Collection - Superheroes
18 min
240
Effisode - Making Cents of it All
6 min
241
Why a Diagnosis Matters with HNRNPH2 Rare Mom A...
36 min
242
Helping to Further the Patient Impact of Genomi...
30 min
243
Effisode - Putting the Play in Playground with ...
7 min
244
Relief and Inspiration for Mothers of Children ...
57 min
245
Advocates Come in Small Packages - My Life with...
20 min
246
Effisode - Unexpected Moments in the Stairwell
5 min
247
Rare Disease - The Ultimate Special Teams with ...
40 min
248
Rare Disease Adoption with Josh and Monica Poynter
27 min
249
Effisode - Empathy Puts Some Pep in Your Step
7 min
250
Rare Disease and Grief - Its Ok That You're Not...
62 min