A Rare Collection - A Father's Day Special - Amidst the Storm

Once Upon A Gene · Jun 15, 2023 · 17m

ONCE UPON A GENE - EPISODE 191

A Rare Collection - A Father's Day Special - Amidst the Storm

There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme.

EPISODE HIGHLIGHTS

Jessica Fares

My dad is a fixer by nature. He's watching his grandson struggle with the debilitating aspects of SYNGAP1 and his daughter learning to navigate the heartbreak of being a rare disease parent. Since he can't fix it, he does everything in his power to make things better for both of…