Jamas LaFreniere – Corn Starch, Quality of life, and the importance of an Umbrella
On this episode of Raising Rare, we have the opportunity of talking with Jamas LaFreniere the father of a daughter with Glycogen Storage Disorder Type 1B.
On this episode of Raising Rare, we have the opportunity of talking with Jamas LaFreniere the father of a daughter with Glycogen Storage Disorder Type 1B.
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
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