GSD1b Strong: Patient Spotlight. Remembering Kim…
The GSD1b community owes much of its strength to the adult 1b patients who continually provide wisdom and support to patients who came along after
September 8, 2023
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The GSD1b community owes much of its strength to the adult 1b patients who continually provide wisdom and support to patients who came along after
In a recent piece for the Courageous Parents Network, GSD1b caregiver Margot LeFreniere articulates life with GSD1b as a chronic crisis existence, where 24/7 management
In the spring of 2023, Sophie’s Hope Foundation and CureGSD1b started organizing and facilitating monthly support group calls for GSD1b patients and caregivers. The calls
Being an autosomal recessive disease, parents who carry GSD1b mutations have a 25% of having a child with GSD1b with each pregnancy. This means there
Rare disease patients do not come with a handbook, and whether they are 30 days or 30 years old, there can often be very little
(as told by a GSD1b family) The term glass children refers to “siblings of a person with a disability. The word glass means people tend
Who says cornstarch is just for gravy thickening… or glycogen storage disease… did you know you can also make your own sidewalk chalk paint with
One of the reasons we started the GSD 1b Strong: Patient Spotlight series is because we wanted to highlight the lives of those who live
Brooks’ story is one that resonated with other GSD1b families– where a seemingly routine doctor’s appointment for symptoms that could be attributed to many things
With summer upon us in the northern hemisphere, many folks are hitting the road, with cornstarch in tow. The thought of traveling with GSD1b can
Hello Warriors! Long time! Since I’m a little better and have more “social life” the blog is a little abandoned, but I’m sure you understand…
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