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Running to #CureGSD1b! Support our 2023 Boston Marathon!

Sophie’s Hope Foundation is on a mission to develop new treatments and ultimately a cure for Glycogen Storage Disease Type 1b.  The foundation was started by Jamas and Margot LaFreniere after their daughter, Sophie, was diagnosed in September of 2019 at the age of 2.  GSD1b is a life threatening ultra rare genetic disease that has no existing FDA approved treatments. We are on a mission to change that.  The foundation is based in Hopkinton, MA and is a fully registered 501c3 charitable organization.  Over the past few years, Sophie's Hope Foundation has raised over $500,000, started the first and only GSD1b Patient Advocacy Group, developed a new mouse model, established an online patient registry, funded several research projects, and started collaborating on multiple drug development programs.  

Jamas is Sophie's Father and will be running in his first marathon at the ripe old age of 40.  The Boston Marathon has special meaning to the LaFreniere's, as they live less than 2 miles from the start line.  We have said that nothing will stop us from finding a cure for Sophie and we will do what it takes.  Jamas is putting himself through months of training (in the snow and freezing temps) to raise awareness and money for Glycogen Storage Disease Type 1b.  Last year Sophie's Mother, Margot, raised $22,000 and successfully finished her first marathon.  Now its Dad's turn!  Help us crush our goal this year!

Thank you for your support and please help us spread this far and wide!

If you are Dell employee please donate here to take advantage of matching: https://dell.benevity.org/camp...

You can learn more at www.sophieshopefoundation.org 

We are forever grateful for every single donation, word of encourage, and support.  We don't take it lightly.  

Thank you,

Jamas, Margot, Ali, and Sophie

health, raredisease, curegsd1b, glycogenstoragedisease, gsd1b, gsd, runningtocuregsd1b, bostonmarathontocuregsd1b

Donations

  1. Jaime Pacheco

    1 Day ago

    US$20.00
  2. Patrick Mulvihill

    21 January

    US$126.00
  3. Phillip Kyriakakis

    11 January

    US$25.00
74 Donations