Grace Science Foundation

The Grace Science Foundation is a US-based nonprofit organization, designated for medical research, specifically focusing on the rare genetic disorder known as NGLY1 deficiency. Established by Matthew and Kristen Wilsey, the foundation is a prime example of how a family's personal experience with a rare disease can inspire systemic change in medical research.

Mission

The primary mission of the Grace Science Foundation is to pioneer faster, more cost-effective, and collaborative approaches to scientific discovery. It aims to find a cure for NGLY1 deficiency while also contributing to research that could benefit patients with other diseases.

Background

NGLY1 deficiency is an extremely rare genetic disorder that affects very few people worldwide. Initially, when the Wilseys began their journey, approximately 40 families had been identified. Today, thanks to the efforts of the foundation, over 100 individuals with this condition have been identified globally. This increased awareness and networking have provided valuable insights into the disease and fostered a community of support.

Activities

• Research Funding: The foundation primarily funds medical research into NGLY1 deficiency. It has been involved in various scientific projects and has contributed to understanding the biology of the NGLY1 gene.
• Community Building: One of the notable achievements of the Grace Science Foundation is building a tight-knit community of families affected by NGLY1 deficiency. In 2017, it organized a conference in Palo Alto, California, which marked the beginning of this rare disease community.

Financials

As of its most recent financial disclosures, the Grace Science Foundation operates with significant financial support from contributions. It reported revenues of $827,000 and expenses of approximately $1.29 million in 2023. Donations to the organization are tax deductible.

Governance

The foundation's board includes prominent figures such as Matthew Wilsey, Ken Drazan, Chelsea Clinton, Egon Durban, Pete Briger, J. Taylor Crandall, and Elle Stephens. The absence of executive compensation reflects the organization's focus on utilizing funds directly for research and community engagement.

Collaboration

The foundation has also collaborated with biotech companies and renowned scientists, such as Dr. Carolyn Bertozzi, a Nobel laureate. This collaboration led to the establishment of Grace Science, LLC, a company focused on developing treatments for NGLY1 deficiency and other diseases through NGLY1 inhibition. The company has raised significant capital and is moving towards clinical trials.

Impact

The Grace Science Foundation's approach not only targets the cure for NGLY1 deficiency but also explores broader applications of the research into other diseases like cancers. Its work is praised for pioneering new models of research collaboration and community engagement in rare disease research.