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
26
Hospital Survival Kit - Advocating for Your Chi...
23 min
27
Real-World Self-Care for Caregivers - Tiny Wins...
17 min
28
Finding Strength in Friendship - Building In-Pe...
24 min
29
Beginners Guide to Rare Disease - Wisdom from O...
24 min
30
Chasing Glimmers - Electric Love Disability Ret...
32 min
31
Choosing Friends as a Rare Disease Parent - Bui...
16 min
32
Chasing Glimmers - Whats Glimmering with Katie ...
31 min
33
A Mother's Mission - Project Baby Lion, ASO The...
34 min
34
Navigating Physical and Emotional Stress and No...
46 min
35
Where the Glimmers Can Surface
9 min
36
Join Us for The Global Genes Week In Rare
6 min
37
Rare Disease Research - Insights from Charles R...
30 min
38
Rare Connections in NMOSD (Neuromyelitis Optics...
37 min
39
Chasing Glimmers - Illuminating Hope and Lesson...
44 min
40
Are You Worried About Your Baby's Development -...
8 min
41
Understanding Genetic Counseling - Essential In...
27 min
42
The Power of Genetic Diagnosis - More Than Just...
11 min
43
Balancing Rare Disease Advocacy and Family - Na...
36 min
44
Uniting Strengths - Rare Disease Collaboration ...
35 min
45
Episode 228 - Strength In Unity - The Power of ...
51 min
46
Bringing Balance Back to the Language of Disabi...
51 min
47
From Classrooms to Communities - Parents Vision...
45 min
48
The Bravery of the Brokenhearted - A Big Brothe...
46 min
49
The Complicated World of ICD10 Codes with CEO a...
Rare Diseases Need an ICD-10 code
28 min
50
Rare Epilepsy Network with Ilene Penn Miller an...
51 min