Glycogen Storage Disease Type 1B (GSD1b) Patient Advocacy Organization

Sophie's Hope Foundation

Driving Better Outcomes and 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

Dell Employees

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

Ways to Donate

Please consider supporting our mission to cure GSD1b by donating today. All donations are tax-deductible (Tax ID 84-5014314) and tax receipts are available by request. Please also consider checking with your employer about company match programs. There are several ways to donate:

Online by credit card or paypal

6th Annual Swings for Sophie Golf Event attracts 304 golfers and raises $266K

Our 6th Annual Swings for Sophie Charity Golf Event once again raised the bar! We had another incredible sell-out day at New Seabury with 304 golfers on both world-class courses. A huge thank you to our presenting sponsor, EchoStor Technologies. Thanks to Jersey Mike’s for providing lunch for 304 hungry golfers and 30 volunteers. We also appreciate our other major sponsors: Davis Companies, Mike and Sonya Sullivan, Labcorp, Dell, NetApp, and WekaIO.

LaFreniere Family Sophie's Hope Foundation's Mission to #CureGSD1b

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.

CUREGSD1b

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 jamas@sophieshopefoundation.org. 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!