Sophie’s Hope Foundation - Curegsd1b

10/12/2026

Awareness week coming up! See below! 👇

The countdown is on for week! Prepare to be aware AND get yourselves ready for another epic year of the ! 😁

GSD1b patients and caregivers, be sure to go check out this year's Frame Maker app in the GSD1b Facebook group for some really amazing frames, story cards and other awesome editable content. We give huge thanks to Raul Apăscăriței, a 1b dad himself, for all his help is making this awareness year very visible and with tons of ways for patients, caregivers, friends and family supporters to get in on the content creation and sharing too! Sophie’s Hope Foundation - Curegsd1b

02/27/2026

A reminder of why rare disease day matters!!!

Rare disease patients and advocacy organisations are often asked what makes rare disease advocacy different?

Here are just a few reasons we advocate so hard for GSD1b:

✨We cannot look to large disease organizations for financial support. We are responsible for funding the research into our disease. The funds we raise come from patients, family, friends and our own communities. It’s bake sales, golf tournaments, selling tshirts, running marathons, hosting parties to move the needle forward.

✨We are a small patient population and we can only include those in studies and research who want to be found. To move research forward for things like better therapy and cures, we need data. We are responsible for funding projects to collect usable data for scientific research and the pool for this is very small.

✨We are very spread out, all over the world. There are not many of us and opportunities to connect in-person are few— and often involve resources and stable health to travel. If we want a community, we have to build it, online or otherwise.

✨We bear the burden of educating medical professionals and the world around us. For an ultra-rare disease like GSD1b, we cannot rely on medical professionals knowing about our disease— most have never heard of it and will not be familiar with treatment protocols. The care we receive depends on us being able to advocate and educate.

02/25/2026

Hey Folks - We are about 6 weeks away from our 3rd Annual SHF Spring Party! Please help us make this another big success and fun night by getting your tickets and sharing with friends and family. We have live music, tons of food, and amazing raffles and auction items.

We are also seeking help with raffle baskets and auction items. If you would like to help please let us know 😁.

01/19/2026

Ask The Expert - See Below for details ❤️🦄💪

Living with hepatic GSD is about so much more than lab results and treatment plans. On Monday, March 16, 2026, join us for an Ask the Expert webinar with Dr. Florence Kinnafick (Loughborough University, UK) as she shares her research on the emotional and social impact of living with Glycogen Storage Disease type 1b. We’ll explore how GSD shapes identity, relationships, mental health, and daily life – and how we can use this information to improve the lives of patients and caregivers with GSD1b.

The webinar will be held live with presentation and pre-screened questions from the 1b community, recorded for those who cannot attend and placed on the Youtube page for future viewing. Simultaneous interpretation services may be available upon request, in advance.

Important details:
1. Questions will be taken in advance of the webinar. The deadline for question submission for this webinar is February 16. This gives presenters time to address as many questions as possible in their presentation and via the moderators in the Q&A. Keeping questions as general as possible will improve the likelihood of your question being answered, as very specific questions tied to particular patients are difficult for experts to answer in a thorough and responsible manner.
2. Registration is required in advance and all are welcome. Registration deadline is March 15. Please use the QR code or visit https://tinyurl.com/GSD1bsocial
3. To inquire about interpretation, please email: [email protected]
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Webinar topic: Beyond medicine: the emotional and social impact of living with Glycogen Storage Disease 1b

Expert:
Dr. Florence Kinnafick, FHEA
National Centre for Sport and Exercise Medicine
Loughborough University, UK

Date and Time:
Monday, March 16, 2025
1700 (5pm) Central European Time
11am Eastern US Time
8am Pacific US Time

Sophie’s Hope Foundation - Curegsd1b

12/11/2025

🚨🚨 Exciting project!!! 🔬🧬 👇

We’re proud to announce funding for a new $100,000 research project: “Investigation of the Mechanism of Mannose Action and Clinical Application in Neutropenia in GSD1b.”

Led by Dr. Yunkoo Kang with collaborators in the U.S. and Korea, this 2-year study will explore how mannose supports neutrophil function and evaluate its clinical safety and effectiveness in GSD1b patients. The team will analyze neutrophil function using an innovative low-cost device developed specifically for GSD1b.

Why this matters: Mannose is accessible, well tolerated, flexible to dose, and may offer a safe, patient-friendly treatment for GSD1b neutropenia and inflammatory bowel disease. If successful, this project will help establish clear clinical guidelines for mannose-based therapy—bringing us one step closer to practical, cost-effective care options for our community.

Funding projects like this is essential to driving better outcomes and expanding treatment possibilities for everyone living with GSD1b!

Sophie’s Hope Foundation - Curegsd1b