GSD Awareness Week: Day ONE + the Frame Maker!
It’s day ONE of #gsdawarenessweek. Let’s start with some basic facts about #gsd1b. Click through the learn, download and SHARE! If you follow cureGSD1b on
October 19, 2026
It’s day ONE of #gsdawarenessweek. Let’s start with some basic facts about #gsd1b. Click through the learn, download and SHARE! If you follow cureGSD1b on
Progress in GSD1b doesn’t happen by accident. It takes families willing to share their stories, a strong patient organization coordinating research and support, and a
Join us for a special Ask The Expert Webinar on Women’s Health in GSD type 1 (a and b) on Wednesday, September 30, 2026, with
Living with hepatic GSD is about so much more than lab results and treatment plans. Watch the Ask the Expert webinar with Dr. Florence Kinnafick
Huge congratulations to Krissie Rothermel, mom to a GSD1b warrior, for conquering the Boston Marathon on behalf of Sophie’s Hope Foundation and CureGSD1b! This was
GSD1b Connection: Virtual Meet-ups in on for late April! Join us to talk about GSD1b inflammatory bowel disease and GI issues. All are welcome. If
We especially love hearing from the adult patients in our community, as they often have a lifetime full of wisdom and perspective to share. And
A huge thank you to Brooks’ family and friends for hosting a neighborhood lemonade and bake sale to support Sophie’s Hope Foundation and CureGSD1b! Their
This week we are bringing you Otis from Slovenia and his story with #gsd1b, as told by his mom Melita! Thank you again, Otis and family
We’re excited to share some big news! RTW Foundation has awarded Sophie’s Hope Foundation / CureGSD1b a $75,000 grant to fuel GSD1b research and support
Happy Wednesday, #gsd1b warriors! This week we are bringing you Eliana’s story with GSD1b, who reminds us of the importance of community— and specifically the power of
This week we are excited to bring you Sylvi’s story, as she shares what it is like to be a teenager with this disease, in
Scaling up research means scaling up fundraising. As Sophie’s Hope Foundation/cureGSD1b commits to larger, more complex studies, every community‑driven campaign truly moves the needle for
Today we are happy to share Ognjen’s story with you, in both English and Serbian. Big thanks to Ognjen and his family for taking part
Today we are sharing Aidan’s story about life with this disease, including the struggles, triumphs and wisdom of the last 16 years. Thank you to
Our 2025 Year in Review is here! It was a truly monumental year for GSD1b: we launched a multi‑year international prospective natural history study, funded
Glycogen Storage Disease Awareness Week is just around the corner! Feel free to download and use these images to help raise awareness on social media.
The next Ask The Expert webinar is on the calendar! The topic is liver transplants in GSD1b and the presenter is not only a GSD
“Behind the Breakthrough” is a series spotlighting the researchers and clinicians dedicated to understanding and treating GSD1b. The series explores what drives these experts, the
The recording of the most recent Ask The Expert webinar is available now on the Sophie’s Hope Foundation YouTube site. It was an amazing presentation