News & Media

GSD1b Data Collection Platform – Went live with GSD1b’s first and only Online Patient Registry in partnership with Rare-X and Global Genes. Global Genes –

Congrats to Jamas for completing the 2023 Boston Marathon Congrats to Sophie’s Dad, Jamas LaFreniere for completing the marathon in 4:29 and raising $53,000! Thank

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

Chocolate Bar Book! Watch this short video about the inspiring story behind The Chocolate Bar Book and Jonah Pournazarian.