Children's Fund for Glycogen Storage Disease Research

The Children's Fund for Glycogen Storage Disease Research is a U.S.-based 501(c)(3) nonprofit organization dedicated to funding research for Glycogen Storage Disease Type 1 (GSD1). The foundation aims to make a significant impact in the lives of children and their families affected by this rare genetic metabolic disorder.

Mission

The organization's mission is to support medical advancements through research grants to achieve early detection, effective treatment, and ultimately, a cure for GSD1. They strive for a future where GSD no longer exists, focusing on raising awareness and driving donations to fund groundbreaking research.

History

Established in 2002, the Children's Fund for Glycogen Storage Disease Research was created at a time when research into GSD was limited. As a result, children born with GSD1 often faced poor outcomes, including misdiagnosis, mistreatment, or no treatment at all. Over time, through significant fundraising efforts and increased education, the foundation has improved the survival rates of those with GSD1, helping them live into adulthood.

Operations

All fundraising and administrative tasks are executed by volunteers, ensuring that overhead expenses are kept to a minimum. This approach allows the organization to maximize the impact of their donations on research initiatives. The Children's Fund for Glycogen Storage Disease Research is the only public charity in the U.S. that exclusively supports research towards a cure for GSD1.

Impact

The organization has successfully heightened awareness of GSD1 and provided critical support to the GSD community, including patients, families, physicians, scientists, and pharmaceutical companies. Their efforts have been instrumental in advancing the understanding and management of GSD1, reflecting a shift from merely supporting children with the condition to also catering to adults living with GSD1.

Fundraising Initiatives

The foundation has successfully implemented various fundraising campaigns, including digital initiatives that have significantly enhanced donor engagement and relationship management. A notable example was the "Gift from the Heart" Campaign, which exceeded fundraising targets by 66%, raising substantial funds to support research endeavors.

Conclusion

The Children's Fund for Glycogen Storage Disease Research plays a vital role in advancing the medical understanding and treatment of GSD1. Through relentless advocacy and financial support for research, they continue to push towards their ultimate goal: a world where GSD no longer poses a threat to lives.

[1] https://www.arreva.com/the-childrens-fund-for-glycogen-storage-disease-research [2] https://www.curegsd.org/our-foundation [3] https://www.apbdrf.org/news-releases/apbd-research-foundation-to-participate-in-the-glycogen-storage-disease-value-project [4] https://en.wikipedia.org/wiki/Glycogen_storage_disease [5] https://sophieshopefoundation.org