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 - From the Sidelines
6 min
227
Finding Peace and New Energy to Dig Deeper Afte...
27 min
228
A Rare Collection - Rare Disease Storytelling -...
17 min
229
Effisode - Rare and Relatable - Rare Disease St...
4 min
230
The 12 Commandments to guide you when you're st...
48 min
231
Leading the World Gene Therapy Program for CTNN...
39 min
232
Effisode - Your Kids, My Kids - They're All Per...
5 min
233
Enabling Rare Disease Treatments with Sanath Ku...
28 min
234
A Rare Collection- Re-Runs with Patrick James L...
18 min
235
Effisode - Family Camp, Annoying Brothers, and ...
4 min
236
Mental Health and living with chronic stress wi...
50 min
237
Discovering New Treatments for Rare Genetic Dis...
32 min
238
Effisode - Heatwaves and a Happy Birthday
5 min
239
Living with Persistent Uncertainty without a Ra...
34 min
240
A Rare Collection - Superheroes
18 min
241
Effisode - Making Cents of it All
6 min
242
Why a Diagnosis Matters with HNRNPH2 Rare Mom A...
36 min
243
Helping to Further the Patient Impact of Genomi...
30 min
244
Effisode - Putting the Play in Playground with ...
7 min
245
Relief and Inspiration for Mothers of Children ...
57 min
246
Advocates Come in Small Packages - My Life with...
20 min
247
Effisode - Unexpected Moments in the Stairwell
5 min
248
Rare Disease - The Ultimate Special Teams with ...
40 min
249
Rare Disease Adoption with Josh and Monica Poynter
27 min
250
Effisode - Empathy Puts Some Pep in Your Step
7 min