Jamas LaFreniere joins Effie Parks on the Once Upon a Gene Podcast

Jamas LaFreniere is the rad dad to Sophie, who has an ultra-rare glycogen storage disease called GSD1B. He’s also the founder of Sophie’s Hope Foundation and CureGSD1b.


Tell us about Sophie’s diagnosis and the foundation you started.

Sophie just turned 4 years old and was diagnosed with GSD1B just before she turned 2 years old. We started Sophie’s Hope Foundation a couple months after diagnosis with the intention of leveraging our network to raise money. CureGSD1b is a patient advocacy organization which was started to bring together doctors, patients, researchers and collaborators.

How do you balance fatherhood, marriage and business?

It’s hard and there’s no way around that. My wife Margot is an incredible teammate and best advocate for Sophie. Margot takes a lot of pressure off me and I try to do the same for her and the balance works despite it being a strain.

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