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
51
Soundtrack of Silence - Love, Loss, and a Playl...
43 min
52
Beyond the Crossroads- Rebuilding and Reclaimin...
34 min
53
A Courageous Gift - The Power of Brain and Tiss...
41 min
54
Finding Strength In Every Step
17 min
55
Pain Points on the Disorder Channel with Daniel...
11 min
56
The Juggle is Real - Navigating Parenthood and ...
49 min
57
GeneDX - A Genetic Diagnosis Matters with Gay G...
45 min
58
A Leap of Faith - Rare Disease Moms on the Bitt...
40 min
59
Turkey Soup for the Soul
6 min
60
Breaking Barriers in Brain Health with Tracy Di...
52 min
61
Policy as a Pathway - Advocating for Rare Disea...
44 min
62
Palliative Care & the Courageous Parent Network...
ONCE UPON A GENE - EPISODE 059
40 min
63
Figuring Out How to Infuse Meaning in the Days ...
42 min
64
Mastering the Art of the Supermarket Answer Whe...
28 min
65
From Heartbreak to Hope - With CEO of Parent Pr...
55 min
66
Effisode - The Irony of it All
4 min
67
These Two Rare Disease Parents Never Met Until ...
60 min
68
Utilizing Child Life Specialists - Empowering R...
32 min
69
A Rare Collection - Five Advocacy Aces Share Th...
39 min
70
Effisode - 2023 SynGAP Cannonball for a Cure
3 min
71
Fundraising Strategies for Patient Advocacy Org...
31 min
72
Navigating Parenthood as a Rare Mom - Expert In...
45 min
73
Effisode - The Unconventional Toothfairy
4 min
74
Advocating with Heart - Striking the Balance Be...
43 min
75
Rare Disease Dad Chronicles - From Stay-At-Home...
47 min