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 2024 Boston Marathon

We are currently fundraising for the 2024 Boston Marathon. Jamas will be lacing up his running shoes for the second year in a row to run the Boston Marathon and raise awareness and money for Sophie’s Hope Foundation. This will be the LaFreniere Family’s third straight Boston Marathon with Margot running in 2021, as well. Please consider donating to his efforts by clicking the tab below and visiting our official 128th Boston Marathon fundraising page. Last year we raised an incredible $53,000! Can you please help us top that? If you prefer to send a check that is perfectly fine as well. Please send to 23 Briarcliff Dr, Hopkinton, MA 01748. You can also donate through company matching programs and Donor Advised Funds. Any questions just reach out to Jamas at Thank you so much for the support and hope to see some friendly faces along the route this year.

me and sophie in natick zoomed

Dell Employees

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

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

4th Annual Swings for Sophie Raises $220K!

We had an amazing day on Monday for the 4th Annual Swings for Sophie Charity Golf Event, presented by EchoStor Technologies. We had 304 golfers across 2 courses and raised an amazing $220K towards our mission to #curegsd1b. Thank you to all our sponsors, golfers, hole sponsors, auction item donors, and volunteers! This event continues to set the bar for fundraising and has allowed us to accelerate our efforts and expand our impact. This network that supports us and our event is incredible and we are so grateful for your generosity. Special thanks to our Platinum Sponsors: The Davis CompaniesPure StorageLabcorpMike Sullivan, and Jersey Mike’s Subs.  Save the date for next years big 5 year anniversary event!  We will be back at New Seabury on Monday July 29, 2024.

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!

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.

Join Sophie’s Newsletter Squad

Contact Us Today

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