Glycogen Storage Disease Sophies Hope Foundation Boston

Glycogen Storage Disease Type 1b Research Support Fund

Sophie's Hope Foundation

helping fund a cure for GSD1b

Sophie’s Hope Foundation’s mission is to cure GSD1b. The foundation was started by Jamas and Margot LaFreniere after their daughter, Sophie, was diagnosed in September of 2019 at the age of 2 with Glycogen Storage Disease Type 1b (GSD1b). GSD1b is an ultra-rare genetic disease that has no FDA approved treatments and is life threatening. The foundation is based in Hopkinton, MA and is a fully registered 501c3 charitable organization. Our 3 areas of focus are:

1. Driving Research through funding, coordination, and collaboration
2. Raising Awareness globally among the general population, governments, pharmaceutical industry, and regulatory bodies
3. Supporting Patients and Caregivers through community building and education


Running to #CureGSD1b!

Support our 2023 Boston Marathon!

Jamas is running Boston to support his daughter Sophie and Sophie’s Hope Foundation’s mission to cure GSD1b, which is an ultra rare genetic disease.

Online Donations

If you prefer checks they can be made out to Sophie’s Hope Foundation mailed to 23 Briarcliff Dr, Hopkinton, MA 01748. Please see if your company has a matching program and reach out with any questions or data needed. Our Tax ID is 84-5014314
If you are paying for the Swings for Sophie Golf Event please use the donate button and input the amount you owe

Dell Employees

Please use this link for donations to take advantage of matching program.

Mission Statement

Sophie’s Hope Foundation’s mission is to help find a cure for GSD 1b. We believe we can accomplish this by funding research and by coordinating the collaboration of patients, caregivers, doctors, researchers, and drug companies.


If you have GSD1b or are a caregiver to someone with GSD1b please check out our Patient Advocacy Organization.


Sophie’s Hope Gear

Please check out our new online store for t-shirts, sweatshirts, and tanks. We have kids sizes available too. If you are interested in hats please contact Jamas directly at We have a large assortment of hats and winter beanies. All hats are $20 and can be shipped to you. Thanks for supporting us and wearing our gear proudly!

Become a Supporter

Join Sophie’s Newsletter Squad

Founder and President, Jamas appears on “The Big W” podcast to discuss Sophie’s Hope Foundation.
Sophie's Hope Foundation is a proud member of the following.

Contact Us Today

Sophie’s Hope Foundation
Jamas LaFreniere – Founder and President
23 Briarcliff Dr, Hopkinton, MA 01748.