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