Glycogen Storage Disease Sophies Hope Foundation Boston

Boston Marathon

Sophie’s Hope Foundation began receiving a single bib for the Boston Marathon in 2022 through the Town of Hopkinton. The town receives 50 bibs per year and holds a lottery for verified 501c3’s based in Hopkinton, as well as other organizations providing services to the town. It’s never a guarantee that we will receive a bib, but we are grateful for the opportunity and maximize it as an opportunity to raise awareness and funding.

Running to #CureGSD1b!

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 you to all our donors for your remarkable generosity.

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Running to #CureGSD1b!

Read about our story in the Hopkinton Independent

Local parents go Marathon distance to stop glycogen disease

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.
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Hockey Alumnus Jamas LaFreniere '06 Running Boston Marathon to Raise Money, Bring Awareness to Sophie's Hope

Admittedly, former Babson College men’s ice hockey standout Jamas LaFreniere ’06 was never a runner. Despite this, he is now just weeks away from running his first Boston Marathon in support of his daughter Sophie and the foundation he and his wife Margot started in her name just over three years ago.

Running for a Cure 2023: A Fundraiser for GSD1B From the Sophie’s Hope Foundation

Jamas and Margot LaFreniere started the Sophie’s Hope Foundation in 2020 shortly after Sophie, their daughter, was diagnosed with a rare disease: glycogen storage disease type 1B (GSD1B). The mission of the foundation is to support the development of treatments and a cure for the rare disease. This often entails fundraising for research and other initiatives that can further progress the creation of a treatment. Now Jamas is training to run in the Boston Marathon in order to raise money and awareness.
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Marathon spotlight: Margot LaFreniere

Boston Marathon

Leading up to the April 18 Boston Marathon, the Independent will profile local charity runners. This issue we highlight Margot LaFreniere, who is running to raise funds for Sophie’s Hope Foundation.

Congrats to Margot LaFreniere for completing the 2021 Boston Marathon and raising $22,000 towards our mission to #curegsd1b! Thank you to everyone that supported us by donating or cheering her on along the route!

Child’s endurance inspires mom’s marathon

Since the age of 2, Sophie LaFreniere has demonstrated strength and endurance in her long battle with glycogen storage disease (GSD). This month, her mother, Margot, will put her own endurance to the test as a participant in the Boston Marathon.

“I always wanted to run the Marathon, and wanted to do it for a good reason — and what better reason than to run for my daughter?” Margot says.

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Running for a Cure: A Fundraiser for GSD1B From the Sophie’s Hope Foundation

Jamas and Margot LaFreniere started the Sophie’s Hope Foundation in 2020 shortly after Sophie, their daughter, was diagnosed with a rare disease: glycogen storage disease type 1B (GSD1B). The mission of the foundation is to support the development of treatments and a cure for the rare disease. This often entails fundraising for research and other initiatives that can further progress the creation of a treatment. Now, Margot is training to run in the Boston Marathon in order to raise money and awareness.